Fighter Pilotson and the Redditors of SELF. Chapter one: Not the beginning

Two weeks ago, I posted this in the subreddit SELF on Reddit:

My father died. Toworrow I have a meeting with a counselor/psychotherapist. How do I get the most out of it?

My father died one month ago after 10 years of ALS, which is a neurodegenerative disease that causes the motor neurons which control voluntary muslce movement to disintegrate, and voluntary muscle movement to slowly disappear accordingly (also known as Amyotrophic Lateral Sclerosis or Lou Gehrig’s Disease). He died of pneumonia because he didn’t have enough muscle power to cough up the mucus in his lungs.

I am the only one who was in contact with him for all 10 years, apart from a few friends he was in contact with over email (but never met after he got sick), and the helpers who were at his house for an hour once a day, every day for the last two years of his life. There was a girl he especially liked, whom I have never met.

Until two and a half years ago, there was no other family than me. Then I finally got him to meet my girlfriend, and they became close friends. I am grateful that they met. It is amazing for me to have had someone to share my father with. Living a life while being alone with awaiting his death was a demanding task. She is and he was an amazing person, and it was wonderful experiencing them together.

Then, one month ago, in the hospital, after two weeks of pneumonia, he stopped breathing. Then his heart stopped beating. A few days ago his dead body and the coffin it was in were burned in a crematorium, and put into an urn. In a few days, the urn will be put in the ground.

Tomorrow afternoon I have a meeting with this counselor/psychotherapist, for whom I have great respect. He works at a private hospital that works with people with my fathers’ and other neurodegenerative diseases, and he has been a fantastic help before. I have been in sessions with him about 7-8 times with him, and it is free (through insurance), but I only have a few sessions to make do with. He covers a lot of people, has limited time and I think a lot of the others are worse off mentally than me.

My #1 question to you is:

How do you think I should go about it?

I am a male, 28 years old.

Forgive me if there are errors in my English, and please comment on them, as I am not a native speaker but want to get better. And if there is something you would like to know about me to better answer my question, then ask.

tl;dr: My father died after 10 years of debilitating illness. My #1 question to you is: What do you think I should do or think in order to get the most out of my psychotherapy/counseling session tomorrow?

Bonus #2 question: If one of your parents died tomorrow, what would you wish you had told them?

I made two obvious mistakes, 1: The “tl;dr”. Having thought about it for a bit, I really think it is an awful genre. 2nd (and ever bigger) mistake was the BONUS QUESTION. What did think I was, the host of a HOME SHOPPING TV ad?

I knew as soon as I saw it posted that I would regret the “tl;dr”. Then I thought of Beckett saying: Fail. Fail again. Fail better.

Nevertheless, several people replied, among them one who proclaimed to be getting his PhD in clinical psychology. I believed him, but did not look into the matter. I replied to him quickly, but waited too long with the others. I put replying aside and ignored it. Then finally yesterday, I spent half an hour replying to all of them. I need to do the same with an even older Reddit post with several replies I haven’t responded to. I think I should reply now that they replied.

In other news: All my respondents have been very supportive. It’s great.

But it’s not an easy genre. I have found obviously good posts though, like the top comment for this one (advice for police invistigation given by one redditor to another whose friend was killed by a hit and run driver), and I like the karma system (although the vastness of it all makes for a lot of disposability, which I am prejudiced to think makes for “less” quality, but we’ll see). On the one hand, if I spend more time there, I could probably improve my participation and make something I like out of it, and find more images like this one to accompany my posts here on the blog:

I kind of really like these AdviceAnimals. A collectively upheld cast of joke characters. They are also kind of really a waste of time. But not all empty.

The day after I posted on the above question Reddit, I asked the therapist if he thought it would be a good idea to bring a voice recorder with me to a therapy session. I asked because I had been thinking about it as a method for writing, but was unsure about the effects it would have on my honesty. Which I should make an effort to keep as strong as possible in therapy, as I agreed with another participant on Reddit that it should.

I don’t feel people ask enough on how it is for me now my father is dead. It is not easy either, taking my turn to speak. It’s like my friend the saxophone player said the other day to his brother, who had just played a concert: You don’t get a solo — you take it! I believe he might have been joking. Imagine someone they would consider a fool saying it.

I am thinking of doing an IAmA (I am A) … AMA (Ask Me Anything) on Reddit in an attempt to solve the problem. The topic could go like this:

My father died 6 weeks ago and I feel like people don’t ask me enough questions about it. AMA

I think the directness could be a good thing. It’s also kind of whiny, which I don’t like. It’s also honest. Maybe I like that it doesn’t try and impress anyone. It calls out for them to ask questions. I wonder if it would work. I should think less, and do more. And I will once my exams are over.

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Today I was at a group meeting with the therapy group I’ve been attending every other week (excluding the odd misses, exam periods and the six weeks I spent in New York City last spring) this past year and last couple of months. I was there to tell the others about the death of my father.

The participants are all young people with terminally ill parents. There are other groups for young people with dead parents. We were six today, which I think is the highest number I have ever counted there. Myself, a girl who has been there since august, one I had met once and three I had never met before. I will not detail the stories of the other participants, even though they would never find out if I did.

All meetings begin with the psychologist asking if someone would like to begin. I have never liked beginning, but am not sure exactly why. But I would likely reject explanations such as “I want to make room for the others” on grounds of beeing poorly disguised vanity.

Today one of the new ones started. She talked for about half an hour while the psychologist asked questions. Then one of the other new ones took over. Then the last of the new ones. Then the psychologist looked me in the eyes for a while, and I asked her if I should say something about what happened.

She thought that this would be a good idea.

I started by addressing the ones I hadn’t met before. I told them that my father had suffered from ALS for 10 years, a progressive, incurable illness which causes degeneration of motor neurons, the nerve cells in the central nervous system that control voluntary muscle movement, which in the end leads to death due to different complications (thanks to Wikipedia for much of that description – in reality I said something like that, but less concise). He was in a wheel chair from 2004, from the summer of 2009 (I think) in a motorized one.

During the years, he gradually lost the use of his limbs, the ability to speak (it disappeared entirely 3-4 years ago), and there were gradually more and more things he couldn’t eat. Tomatoes and boiled potatoes for year of getting them in the wrong throat and choke to death, steaks because he could no longer chew them.

The last of our court dishes (as he called them), before soup was the only choice, was mashed potatoes with an italian style ragù. If you ask me, I got pretty good at making that dish. We stopped eating the soup because it got cold before he could finish it. I made it through three and a half bowls of soup in the time it would take him to eat one. In the beginning I left some for him in the cooking pot, should he want it. We both knew he was not going to want it. In the end, I ate it all in order for time to pass. I slowed my eating pace greatly in the hope that he would feel he was less slow. After soup, he turned to eating only mashed fruit and yoghurt with sesame seeds and lin seeds in it (after which he got in touch with a dietist and turned to protein drinks, but I’ll tell you more about that later).

The extinction of motor neurons in his body was an unusually slow paced process. As far as I have been able to read, only 10% of all persons with ALS (PALS) live longer than 10 years after they are hit. The mean age of years people live with the disease (what is the term for this?) is around 3-4 years. You need to keep in mind, though, that the range is big, and that these are only statistics. It only says that he lived longer than the norm, not why.

He felt the first symptoms around the year 2000, but did not get properly diagnosed until novomber 2002, because it is a difficult diagnosis to give. I have been told the problem to be that there isn’t one single test you can take which will show if you have the disease or not, and that this and the lack of a cure has to do with the amount of money invested in research, which has to do with the number of people who have the disease, and the likelyhood of the medicinal industry to produce an effective drug in the next few years and thereby make greater revenue.

I am, or was, the only family, he had. Then I said:

Let me tell you about his death. He died about 3½ weeks ago, or no: 4 weeks ago. He was put in hospital the january 25th and died febuary 9th, two weeks later. He died in the early hours of a wednesday and had at the time been unconscious for a few days.

I talked to him anyway, as if he could hear me. I didn’t know for shure that he couldn’t, but it seems unlikely that he could. My girlfriend and I were told tuesday afternoon by a neurologist, that most of his higher brained functioning had “turned off”.

I viewed his diagnosis as very convincing. He pointed the beam of a small torch into my father’s eyes to see if there was any reaction. From my memory of a conversation I once had with my house doctor I have an idea that many doctors draw small check marks with the torch in the eyes of the patient, when they beam light in there to check the reactions of the different visible parts of the eye.

The neurologist grabbed my father’s head and turned it from side to side in quick jerks. I think he wanted to see if the eyes reacted in any way. My father’s eyes were open at that time. He also shouted my father’s name at him and knocked on his chest to wake him up (I’d like to know if has kids and wakes them up like that. I have that sentence fragment: I’d like to know if he from my dad. I visualise him using it to say something about some loony on TV) .

Then the neurologist told us, in a quiet, calm voice, that there probably was no activity in my father’s higher brain functioning. That everything above the brain stem has been cut off. I didn’t want to let it influence the conversation, I had had with my father. I wanted to continue our dialogue.

I was with him every day the two weeks he was there, for a minimum of 3 and usually 5 hours. Some days more. My girlfriend was there every day apart from two. We slept there the last three nights, or: the second night she went home because she couldn’t sleep, which was fine with me, I slept surprisingly well. I woke a couple of times during both nights that I slept there, and probably didn’t sleep more than 6 hours per day, spread over different periods, which is quite a bit below my average.

The meeting wasn’t actually today, but that was how far I made it before I got too tired to continue and went to bed. A couple of days later, I translated it into English and made the above image and posted.

Then I decided to take a break from blogging, because my exams are coming up. Developmental psychology. Most of what I have read has been a drag, but I blame it on the book, which seems to be written for people younger than me. But there is another one, and some articles as well, which I prefer. I just really wish I could go live on a mountaintop and write my own stuff, but I need to do this. So bye for now.

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Notes at his desk

I am sitting at his desk.

I am lighting my pipe.

As part of my mourning, I got high and saw Back to the Future 1 in HD on the 40″ TV he left me. Hey doc? Doc! Hello! Anybody home? You probably also saw it multiple as a child, and we probably both preferred the follow-up because of the fascinating future it depicted. But the first one was really much better than I had expected, I really enjoyed the repetitions of small parts of the story — the disgusting Boss-man Biff knocking on the head of 1980’s loser George McFly (Michael J. Fox’s character Marty’s father), and then later in the film, when Marty goes back to the fifties, he finds that his dad went to high school with Biff, who also then knocked on his head with a closed fist. Developmental psychology of Hollywood. And the hero of the future who fixes everything all by himself, using the supposedly yet unknown technology of skateboarding to solve the problems of his somewhat unhappy family:

There is also a scene in which the same-aged father and son McFly are talking, Marty trying to influence George. They are hanging up laundry round the back of his father’s family house, and the 80’s youth gives girl advice to his own girl incompetent father. I thougt it could be interesting to think about what kind of advice I would give him. Maybe it could also be interesting for you: What advice would you give your own parents, could you travel back in time and hang out with them around the time they met?

I would tell him to use some of the money he inherited from his foster father to try out different counselors until he found one he liked, and to be honest in front of him or her. I would have liked to go to New York with him, to stay there for the last month of some summer. I would have liked to have gone to a Pink Floyd concert with him. I would tell him to begin drawing the same things again and again, and to think about how to make art with a social dimension. To become good at drawing in order to teach others to draw. I would probably have become annoyed at his blind openness to *higher levels*, and his lack of criticism in his thoughts. I would tell him to stop drinking so much. Not because he drank too much, but because of the way he behaved when drunk. I would make an effort to question him and to listen.

My parents divorced when I was about 10, two years later my father was in treatment for cancer. A tumor in his cheek, maybe also something in his throat. I will probably find out in going through his papers. I remember the first time I was made aware that something was not as it should be. I was sitting at my computer, in the living room of his and my apartment, headphones on, playing Descent.

For some reason the sound was not on, but I was wearing the headphones anyway. He was talking to a friend on the phone, saying something like: Yes, it’s terrible. No, I haven’t told [my name] yet. I was terrified and remember the feeling stir in my back and spine.

I remember him, a while later, telling me that he had a 50% chance of survival. I think I was twelve but might be corrected in this later on. I remember lying in bed, him standing by my bedside, telling me: The doctors say I have a 50% chance of survival.

I remember lying in my bed at night, maybe the night after he told me but I have no way of cheking the chronology, crying and repeating aloud to myself and who else might be listening: Why my dad? Why my dad? Why my dad? Why my dad? Why my dad? Why my dad? Why my dad? Why my dad? Why my dad?

I don’t remember him comforting me. I think I had an understanding of why he could have had trouble comforting me: that he was the cause of my sadness. I also remember him telling me that he had bought life insurance.

I believe he was announced CURED when I was thirteen. I don’t remember the occasion, but I remember thinking that it made him seem immortal. That I felt it was his super power.

That is a drawing someone did of my father in november 1952, when he was 5. I will probably post a clearer one later, when I have access to a good scanner and the time to archive his photos and drawings.

I am 28 now and am as I said sitting at his desk in his apartment, which is on the first floor. It is across the street from a school and a park — I never before thought about how nice it must have been for him to not have people keeping an eye on him. From where I sit I can see to the right: out the window of his living room: the windows of the school building. It’s a pretty okay building. Not very elegant, but not ugly, and it looks like it does the job of housing teachers and students well. It’s a public school. I have a friend who went there. He was the Casanova of my high school, laid back on a chair and strumming his spanish guitar in the cafeteria after school with a circle of girls closing in on him, drooling. Going for the kill.

There’s lots more stuff on his desk than I mentioned and drew. Left of it is a shelf, fixed on the wall about two inches above the surface of the desk, containing all his favourite spiritual books, and some on psychology and philosophy as well. There are the great works of Kant: Critique of Pure Reason and Critique of Jugdement, books by R. D. Laing, Stanislav Grof, Jung, Plato, Kierkegaard. There is a beautiful copy of The Bible, in a bound pocket-size copy with the title: THE BIBLE in a large but nice and simple typography with hits of serif feet (but not too much, it looks great) on a background of black imitated leather material. There is also, among other “spiritual” books, a whole series of similar looking volumes by an author called Alice A. Bailey. The Wikipedia article on her begins with a large table of warnings. I quote from it’s introduction: Her works, written between 1919 and 1949, describe a wide-ranging system of esoteric thought covering such topics as how spirituality relates to the solar system, meditation, healing, spiritual psychology, the destiny of nations, and prescriptions for society in general. Right up my father’s ally. Not mine.

I accidentally made the above in Photoshop and saved a copy. I want a scanner and time to have fun with it.

Earlier today I was out for lunch and then dinner with my girlfriend. We had croque monsieurs for lunch at this French place we’ve been to before. The guy who runs the place is nice, but this time he served us our croques in croissants because his sandwich bread had gotten old. The croissant was too light for a croque monsieur, my girlfriend thought, and I definetely also felt it did not satisfy my hunger. So on we went to this Indian place. Turns out she’s been there before. It was her ex’s favourite restaurant. The world is tiny. And I have no idea why I wanted to tell you that, but I know it was supposed to lead me to somewhere relevant.

I remember, when I was a small child, my father used to like boiled wiener sausages. I have always found such boiled wiener sausages to be disgusting. I like them fried, but better grilled. Maybe he did as well. He was nok a good cook, not really a cook at all actually. In my opinion. When the microwave oven was introduced to the masses, he instantly bought one. He exchanged it at some point, and soon I will be the owner of it. It’s main function for the last few years has been, both for me and him, to serve as the kitchen clock.

I have never before thought seriously about the use of microwave ovens as something that could contribute to the outbreaks of cancer and/or Amytrophic Lateral Sclerosis. But I think I will stop using them now. Not that I consider my hunch-like thought conjunction to be either true or false. It could be interesting to have a look at what kind of research has been done, because it surely must have been done. But I don’t think I will bother.

So I will eat my biryani left overs cold. So I did. It was delicious.

On his desk are several solid brass cubes. I think he must have used them for paper weights when he drew houses with pen and paper as an architect in his 30s and 40s. In the 70s and 80s. If he drew that much. They don’t really draw that much, architects, do they? I think he also liked them as objects. They are also quite beatiful, and heavy. It would hurt if you dropped them on your feet. I think the two of them must be 1½”x1½”x1½”, the others 1″x1″x2″.

The thought of drawing something just occurred to me and made my happy. There are tools for drawing everywhere here. Let me find some stuff. Puff, puff.

I looked through his drawers and found in the fourth I looked in (there are about 50 drawers in all) a large array of Winsor & Newton inks in different colours. They are beautiful. There is a nice white feather in the drawer, but I prefer the simple fountain pen point bamboo pen I found in a glass on his small table in front of the sofa. In the drawer was also a small “astrological computer” called astro made by a company called KOSMOS. Here is a link I found on it. I have also found a lamp with a daylight bulb in it, which my girlfriend and I when he got it mistook for a “sunshine machine”. Like the big lamps Phillips makes, they are meant for people who can’t handle the darkness of winter. I have brought it to his desk, plugged and turned it on, have found a sketchpad and a green soft plastic/hard rubber cover to put it on and will now begin drawing.

And also I took my white jeans which I bought for and wore at my father’s funeral off and put on a pair of his Adidas sweat pants.

Then I ruined three pages in one of his notebooks. I used a lot of colours. I’ll let you see the first one, the others are too embarassingly bad:

In the letter he left me with instructions on his funeral and the things I will inherit, he instructed me to fill the unused pages of his sketch books up with my notes.

There are so many things to say that saying them is difficult.

I have a life. My father had his life. You have your life. We all have one life each. We are members of the human species, a truly amazing animal. Humans are the most intelligent being in the universe that we know of. Hopefully there are others out there who tackle life in a less destructive way than we do.

See you.

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I am writing you today because my father has been put in hospital

Found this draft for an email which I wrote for my close friend who is a doctor, a few days after my father was put in hospital, on a computer I haven’t used since my father’s death:

Dear [his name]

Thank you for your text. I will write some more on what you said in a while when I connect to the internet.

All exams went well. Cheers! I passed my oral exam gloriously, was examined in the subject of STRESS and used for the occasion among other things my own physiological reactions to describe the rising pulse, the arousal, ”Yes! What do we call it?” asked the professor and made little movements with his arms, priming me for: FIGHT OR FLIGHT! After which they asked me whether I wanted to draw anything, and I most certainly did, so I drew a curve which showed how the level of arousal rose and fell and said something about it which I had half-read on the train that morning. I knew that both my professor and the censor were very interested in stress, so I had made sure to have a look at the chapter on it, and was lucky enough that they referenced the figures and graphs I had looked at. I also made sure to use a direct quote from one of the theorists we had written about in our project. And played a short piece on the trumpet.

I am writing you today because my father has been put in hospital. He has pneumonia. That was a bit of a frightening sentence to write. I am high and have in front of me also a glass of wine. But I am not drunk. He was committed yesterday, his helper dialed 911. I was called by the emergency ward. I had slept long into the day, my girlfriend [I used her name] and I had visited my father [I used his name] the night before and he had not been quite well. He had pointed to himself and pointed a thumb downward. We ate some thai food we had brought, saw WALL-E in HD on his new TV, which didn’t look too good because the TV interpolates to make more frames between the existing ones, to make the picture more ”flowing”. It makes everything recorded with cameras look like the cameras were video cameras from around the turn of the century and animation films look like the in-game renderings of introductory stories to video games. I couldn’t find out how to turn it off. My father slept quite a bit during the movie. When we left we talked about that he should have seen something he knew.

When I was called I was in the kitchen. I prepared myself, I think, when I heard the phone ring, that it possibly concerned him. Maybe I didn’t prepare myself until I looked at the display, or until I saw that there was no picture in the background, or maybe I didn’t prepare myself until I saw the number and knew that I didn’t know it. But I was prepared when I picked it up, but I don’t think I thought of the possibility that it could be the hospital calling.

I am sorry to say this, but nicotine is a substance I can feel it would be nice to have some of right now. It is an interesting question: is that feeling the product of a mental disorder? Or is it only the overuse of a substance, you do not wish to take, that can be defined as such?

”It’s good that you are working on quitting,” I wrote my mom earlier. I should have written ”I am happy” in stead of ”It is good”.

I believe he will make it. Is it because I don’t want to think about deaf, I wrote. But I meant, of course: death. Crap of God. Because is a violent word, isn’t it? Alternatively, I have trouble preparing for the possibility of his death, because I have prepared myself for it so many times, or so many times when it hasn’t happened.

Thank you by the way for helping me choose a pipe last. It is an excellent pipe which I look forward to sharing with you again soon.

About that habituation – I think I am experiencing feelings I haven’t had for a while. But now, there he lies. And that’s where I came from. I was standing in the kitchen and was told on the phone by a nurse at the hospital, that my father was there with them, and that he had left his apartment without his keys, and would I get them for him. I answered that I would, and that I would also bring his computer (his tablet PC with the synthetic voice software) and asked if they would ask if him if there was anything else I needed to get and bring. The nurse said that he was pointing toward his mouth, and we came to the conclusion that he was missing his dentures. I reminded myself of the things, I needed to remember: Dentures, computer, keys. Keys, computer, dentures.

I had just prepared rice and heated the left overs from the thai food we had eaten at his house the day before. I packed the food in a plastic container and left the pots on the stove. What else? I was on the bus. Then I opened the door: put the key in the box to the right of the door, turned, the mechanic arm above the door opened the door, but the chair in his living room was empty. I picked up the things, he had asked me to, and took a Coke for him from the fridge, ate some of the candy he always has lying around for his helpers. I took an orange soda for myself. I took the bus to the hospital.

I think I must be drunk now. Before today I haven’t been high since you left. It’s okay.

He is in the lung ward at the hospital. On the third floor of the same building where the neurological ward is, where I met with the counselor who couldn’t help me. We didn’t click, I didn’t feel I could trust that she understood what I said. But he is fine there. All the doctors and nurses I have met there have been super great, and I think it is good for him to have a good experience with a hospital. I don’t think he has been in a hospital since he got his diagnosis 8 years and two months ago. I wonder how coherent this is.

He has pneumonia. That is what I wanted to write. And beyond that: I think he is okay. I am also okay. Hope you are well.

I’ll be sending this now. It is 4:20 AM.

With love,
[my name]

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My speech at his funeral


My father was born July 7th 1947 and died Febuary ninth 2011. Today, Febuary 21st 2011, we gather here at his funeral to say goodbye.

Let me present to you the programme: First, I will say a couple of things. We will sing a psalm. We will hear the Prelude to Bach’s Air — played by the orchestra Name Omitted. We will sing the next psalm. We will hear Ave Maria by Schubert — sung by a wonderful mezzosoprano voice. Then the coffin will be carried to the hearse, which will transport it to the crematory.

When the coffin has been carried out, we can go have a look at the place where he is to lie. Afterwards, everyone is welcome for lunch. We have ordered a table for half past twelve at a restaurant in the city. After the ceremony you can grab a hold of my girlfriend, sitting there, and tell her if you mould like to join us for lunch. You are all very welcome.

I have chosen the psalms we will sing from a list my father left me. He has also chosen the Bach piece. Ave Maria is my contribution to the programme, which he has laid out most of the framework and details for. I didn’t add it to dramaticize the situation, but to heighten his presence today. My father loved Schubert, and this song was very much *him*.

He left behind the instructions for me for today along with different texts, thoughts and quotes in a Word document on a USB memory stick, in a folder called Funeral. He began writing the document in 2006 and has added and made changes to it until two years ago, when he must have been more or less satisfied. At the bottom of the first page, at the end of a short, very sweet letter to me, my father had pasted the following Shakespeare-quote, which I also have pasted on the first page of the programme for today. Not for it to serve as a sum of my father’s thoughts on life, but because there was no room for it inside the folder. My father’s spiritual inspirations were many, Shakespeare was only one of them.

Life’s but a walking shadow, a poor player
That struts and frets his hour upon the stage
And then is heard no more. It is a tale
Told by an idiot, full of sound and fury

Signifying nothing.

Macbeth, 5th scene.

My father wanted to be buried at the graveyard here, and for the ceremony to be held in this chapel. You cannot see his stone yet, but he has chosen one that lies flat, facing up. He has chosen for there to be green and white flowers.

This morning, before the coffin was transported from the hospital here, I put in his pocket as instructed his Caran Dache Fixpencil 77, a small sketch pad and an American Buffalo nickle, a five cent coin which he several times during my life has spoken of and shown me. When the urn in a couple of days is put into the ground, it will be like he wanted it: Under a tree and with a view of a tree he can draw.

Until a couple of years ago, it was one of my father’s big projects to draw, again and again in the changings of the seasons, the big tree on the corner of the park across the street from his second floor apartment. It was not his only project. From 1999 until 2008 he drew more than 700 drawings of the same plaster copy of an antique buste of a beautiful woman, which still stands on his dresser in the apartment. During the last couple of years he bought boxsets of DVD’s: all of Shakespeare’s 34 plays in BBC TV productions from the late seventies to early eighties, 30 hours of opera from the Scala theatre in Milano, and on CD: the collected works of Mozart, Beethoven, Verdi and Puccini, and systematically worked his way through all the volumes.

In the document he left me, he also put this passage about the birds in the park. He wrote it at some point during his disease, possibly in one of his many emails to me. He writes:

> 5AM. When the sun rises, there is such a noise in the park — like joy because the light is returning, and the world no longer must lie in darkness! Such a screaming, cheering about the wonder of the world, the wonder of God, the wonder of The Creating Universe, the wonder of creation or whatever it is — every morning! Those birds, ducks and swans, must have unusually short memories if they forget that the sun rises every morning, yesterday as well as today, as if they don’t take it for granted, but join in a cheering choir, just because the sun is rising again! It is surely a wonder we should all be happy about. That the light comes back after a dark and dangerous night, and that there became light in the first place. So we don’t have to live in darkness. Other planets lie in total darkness all the time. It is for sure a blessing to all the creatures on earth and a daily wonder — that the sun rises again. The birds honour it, and they remind me of the wonder of being alive, and of living in light every day. Imagine — if every bird had a soul like us, which every morning takes joy in the sunrise with it, and makes the bird sing so beautifully. It really makes it worthwhile to get up every morning.

My father was an educated carpenter, construction manager, and architect. During all the years of my existance, until he was granted his disability retirement, he worked as an architect for several different firms.

Most of those present today probably remember him as a man whose physique was more or less similar to yours. But about 10 years ago, he first felt the symptoms of the motor neuron disease ALS — Amyotrophic Lateral Sclerosis (Lou Gehrig’s Disease), with which he was diagnosed in late 2002. From 2004 he was in a wheelchair, from 2008 in an electric wheelchair.

He fought the disease with all his great will. One of the first things he did was to buy a “step machine”, a staircase-simulating fitness machine which he set up in front of the window facing the park across the street from his apartment, to keep his dwindling muscles going, and used it to go for a walk in the park every day. Until he no longer could.

But it was very important for him all those years, to do by himself all those things which he was still able to do, and it was difficult every time there was something he no longer could do by himself. Walk up the stairs, eat steaks, unscrew the lid of a bottle with his fingers, button a shirt, speak, draw.

It appears to me that he almost always succeeded in solving the problems that came, and in accepting his current level of functioning as a new normal, and thereby keeping his joy in life. Maybe until the last two weeks, when the situation got a lot worse in a short time. Or no, I actually don’t think he did completely lose his joy in life. He experienced death anxiety, was afraid of not waking up if he went to sleep, but that is certainly not the same as losing the will to live.

On tuesday, January 25th, my father was committed to the hospital with pneumonia. The first ten days it looked like the infection was getting better, and the doctors spoke to him about which new machines he would be needing at home. But he couldn’t sleep at night, because he was scared of not waking up again. It was also very exhausting to have pneumonia, because he couldn’t cough up his mucus, and was very worn from having been bedridden for two weeks. When I visited him on the second saturday of his stay, he woke up for a bit, but the staff hadn’t been able to get in touch with him for a while. He slid in and out of consciousness for the next few days. Mostly out.

In the evening on sunday I communicated with him for the last time. He had been unconscious all day, but awoke when my girlfriend and I came back from a walk down to the big church near the hospital. We were happy that he was present, and I told him my girlfriend had thought the church looked like the famous religious figure it is named after, and that I thought it looked like an organ. At the time my father was too weakened to use his computer for writing, and we couldn’t understand the letters he drew on the blanket. I proposed that I would say the alphabet and that he would lift his eyebrows when we reached the letters he wanted to use. Lifting his eyebrows had by then become the most distinct feature of his nodding movement.

A … B … C … D … E … F … G … H … I … J … K … L … M … N … O … P … Q … R … S … T …

He lifted his eyebrows.


He lifted his eyebrows.

T! Great. T. Next letter: A … B … C … D … E … F … G … H …

He lifted his eyebrows.


He lifted his eyebrows.


He lifted his eyebrows.

Great! H! T-H! T-H, what. Next letter: A … B … C … D … E …

He lifted his eyebrows.

E! T-H-E! The! The what?


The church is an altar.

We continued spelling, slowly.


Built in 1940.

I also told him about something I wanted to ask him, concerning some constructions at the back of the church. Tall pillars which seem to support the church from the outside, and I asked him if these were necessary because there was nothing to support the construction of the church from the inside. He raised his eyebrows and looked at me with a look that told me he had something to say. We spelled out the technical term for the construction (which I don’t know what and can’t find out what is called in English). A piece of information I am very grateful to have recieved.

Most of you haven’t seen my father in many years. I know that he missed you, but also that he couldn’t combine the life he had lived before he got sick with the life he lived after.

But I am very convinced that he was all in all mentally well. He liked his life. And I do not doubt, that his efforts to avoid submitting to the patient role is one of the things that have kept him alive for so relatively long.

I was present at his death together with my girlfriend, who knew my father for the last two years of his life. I am very grateful that she and my father learned to know one another, and very happy that they liked each other so much.

For the last two years, my father has had a helper come to him once a day. I know that it has been an especially large joy for my father to meet his first stable helper Nonami, and I am am very grateful for it, because it has taken a load off my shoulders.

He asked me to read a poem for you. It was written in 1923 by an American house wife and florist named Mary Elizabeth Frye. It is called “Do not stand at my grave and weep”:

Do not stand at my grave and weep
I am not there; I do not sleep.
I am a thousand winds that blow,
I am the diamond glints on snow,
I am the sun on ripened grain,
I am the gentle autumn rain.
When you awaken in the morning’s hush
I am the swift uplifting rush
Of quiet birds in circling flight.
I am the soft starlight at night
Do not stand at my grave and cry
I am not there; I did not die.

I am proud of the father he was and happy that you all came here to take part in saying goodbye to him. Thank you.

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The second time the hospital called me in was at 2 AM on the first sunday of his stay

I remember sitting in a taxi, writing this on my phone on my way to the hospital:

I am on my way to the hospital in a taxi. I have asked the driver to turn off his radio. Cat I ask you to turn off the radio? Yes. Thank you. You’re welcome. They called from the lung ward, my father isn’t taking in enough oxygen. His oxygen is falling.

I was very awake and quite high. Half an hour before sitting in the taxi preparing myself for his death, I was at home and had just put a small amount of cannabis in my pipe and smoked it.

They had called while I was playing a video game to distract myself from thinking about my father being in the hospital and what might happen and what it would mean and how I would feel and the freedom it would give me and how all the signals of his death which I have been given over the past ten years had muffled my panic with their large number and how this was very different from all those times in the way that he in none of those instances had been in the hospital and that he hadn’t been inside a hospital for ten years and that he had no choice now but to commit himself to the systems of the hospital, to accept this challenge.

There was also the possibility that they would cure his pneumonia and that he afterwards might be able to move to an apartment where he could go outside every day, on a balcony or terrace, and feel the wind, rain and sun on his face. Should I regret not having helped him move? He could have bought help to fix it up before selling if he really wanted to move. I don’t think he did, but it is not an easy subject I have digressed into. Then the phone rang and I looked at the number. I knew who it was because I didn’t have it listed and it was a land line. I took great care in getting out of the door in a quick but not panicky manner.

I remember getting out of the taxi and walk towards the building I had left just a few hours before. It must have been the first weekend after he had been put in hospital, because I was home alone. Yes. My girlfriend was in another part of the country, visiting her grandmother. I was walking on a path that pointed diagonally toward the eight story tall hospital building, looked up at it and thought to myself: Is it neccessary for a person in my situation to run at this point? Then I ran inside and hurried up the stairs.

I went directly into the bathroom to take a piss, wash my hands and face, and to have a look at my eyes. I looked sane enough and went out into the corridor where I was approached by a nurse. She asked me if I was my father’s son (using my father’s name), I said: Yes, she said: We just talked on the phone. Listen, your father is not very well. The doctor has been here, he’s had a look at him. At the moment his numbers are a little better, but we don’t know how long they will stay that way. How low are his oxygen numbers? They were below 70, but last I checked they were in their eighties. Is there anyone else we need to call? It was maybe three in the morning. I said no and thanked her, she told me I could go in, I did, past his roommate, another very thin, but older person with a mask, who had spent most of the preceding day watching television.

I went to my father’s bed, took his hand and looked at his thin, pale face with the big, transparent oxygen mask over his mouth and nose, his strengthless arms hanging at his sides and a shallow, fastpaced breathing pumping in his chest. I brought a chair to the bed and sat down. I told him I had been called by the hospital, and that they had said his blood saturation had been low. He looked exhausted. I took his hand. I started crying and told him I loved him. He also started crying. I told him I was so happy he had met my girlfriend (I used her name). He cried with even greater strength.

Time went on. The oxygen saturation in his blood rose. 85, 86, 87, 88.









He stabilized around 94 for a couple of hours, I nursed him and watched over him as he slept. I wrote this, which had happened:

He took my arm and led it to his neck. He was lying down. I had just pulled him further up in the bed. He grabbed the railing and pulled over to one side, led my hand to his neck. There is more bone than muscle, the muscles are small, like shoulder pads under the skin. Or ergonomical soles for shoes. I massaged his left shoulder. It was nice.

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Funeral preparations

I need to work on preparing my speech for my father’s funeral. I consider writing this blogpost to be a wisely chosen preparation.

As part of my speech for his funeral, I will read a passage from the funeral instructions he left me, which I think he might have originally written to me in an email. I have translated it here for you and will tell you beforehand that he lived in on the second floor of an apartment building across from a small park.

5AM. When the sun gets up, there is such a noise in the park, like joy that the light has returned and the world no longer must lie in darkness! Such a screaming, cheering by the wonder of the world, the wonder of God, the wonder of the creating universe, the wonder of creation or whatever it is – every morning! Those birds, ducks and swans, must have unusually short memories, if they forgot that the sun rises every morning, yesterday like today, like they don’t take it for granted but start their cheering choir, just because the sun is rising again! That is for shure a wonder, we all should take joy in. That the light comes back after a dark and dangerous night and that there became light in the first place so we don’t have to live in darkness. Other planets lie in total darkness all the time. It is for sure a blessing to all the creatures on earth and a daily wonder that the sun rises again. The birds honour it and remind me of the wonder of being alive and to live in light every day. Think then, if every bird had a soul like us, that takes joy in every morning with it and makes it sing so beautifully. It really makes it worthwhile to get up every morning.

I might comment on that piece of text later.

Yesterday I was at the graveyard to choose a spot for his grave, at the headstoneshop for a headstone and at my father’s apartment to find the clothes he is to be cremated in. I found a dusted green TENSON-shirt and a pair of white slacks. I will myself be wearing a pair of white Levi’s 501 and an expensive green shirt I bought at a fancy department store the day after the night he died.

He will be buried next to a person with a funny name. There is a tree one can lean against when one visits his grave. It is like he wanted it, under a tree and also, like he also wanted it, with a view of a tree, he could draw. I can draw. And become a part of him.

I am presently testing a writing technique where I first write what I want to say in my mother tongue, and afterwards translate it into English. I thus think and edit these thoughts in a non-English language. Then I translate them into English and edit them in Englihs afterwards. It’s interesting — when I was in New York last spring, people were so sure that what I write is good because I am a foreigner. “What do you mean by writing?” — “I mean committing words to letters.” “Oh my God.”

I am by the way eating something you would probably think was disgusting if I told you what it was. But it is too local a dish that I will risk telling you about it.

I also chose yesterday which of the two halls of the chapel the ceremony will take place in. My father only wrote that he wanted it to take place in that chapel. Because it is beautiful. And it is.

He is dead.

Now I have to write what I want to say. I have arranged for some of my friends who have a string quartet to come and play some Bach and a friend of my girlfriend’s who is an opera singer will sing Schubert’s Ave Maria:

And to top it off, a short account of what happened yesterday at the headstoneshop with the mason:

Hello. Hello. Were you the one that called earlier? Yes. What can I do for you? I need a headstone. My father just died. Yes. Come inside. I wanted to give the mason the instructions from the graveyard office on the demands for the measurements and so forth for the headstone, but he wanted another recipt instead, where it said the coordinates and department I had chosen for him, and signatures to prove the deal was done. Section 30, 11C, he said. I have three different left. We went over to the stones. I chose one which was from a neighbouring country, and which my father’s biological family far out into the links is from. But I chose it because of the surface which was more beautiful than the others’. The mason said: Yeah, that’s the nicest one. I am unsure whether he was consciously manipulating me into liking the stone.

I want the typefont to be Helvetica Oblique because that was how he typesat his emails, apart from their being blue which I don’t think is allowed on that part of the graveyard (where all the headstones lie flat on the ground).

Humans walk to meet their death.

There is a tree to lean on when I visit.

I will ask my girlfriend if she wants to come to New York in the fall, when she finishes her master’s. I will probably go before her.

Coming up: My speech at his funeral.

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