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fighterpilotson

New member
Joined
Feb 23, 2011
Messages
9
Reason
Loved one DX
Country
UK
State
England
City
London
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.

T?

He lifted his eyebrows.

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

He lifted his eyebrows.

H?

He lifted his eyebrows.

H?

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?

T-H-E-C-H-U-R-C-H-I-S-A-N-A-L-T-A-R

The church is an altar.

We continued spelling, slowly.

B-U-I-L-T-I-N-N-I-N-E-T-E-E-N-F-O-U-R-T-Y

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.


*


That is what I told about 35 people a little more than three weeks ago. I had recently turned 28 and wore white trousers and a green shirt. My father's favourite colors, especially when paired, were white and dark green. The shirt was a fresh, lighter, grassy green, but it was the nicest one at the store. I bought it together with the trousers the day after his death.
 
Sounds like you had a great dad, and were a great son! God bless you and your family.
 
youre dad sounds like he was just amazing, as most of our PALS are. very touching story and i thank you for sharing it.
i know all about the spelling of things, letter by letter. that is how my PALS communicates. im greatful you were able to do that with him during his last hours.
blessings to you and yours. im very sorry for you loss.
 
Joni: Thank you for your kind words!

And moderator, if you are looking, I don't know how to contact you: I mistakingly double posted this, could you please delete the other post with the same title. I don't think I can do this from my account. This post here is the one I want to stay because of the comment, although the other post included that:

My father died five weeks ago. I was his only family, recently registered here on the ALS forums and hope to communicate with others in similar situations.

If you find mistakes ind my English, do not hesitate to correct them. It is not my mother tongue.


LizT: Thank you for saying that my dad sounds amazing. I wouldn't have begun the spelling if I hadn't seen the film "The Diving Bell And The Butterfly" (about the editor of Elle who wrote a book like that, he had locked in syndrome). We only communicated like that for one and a half hour. In the end, I, as quickly as I could, made a list of the letters of the alphabet in large type, spread out on four lines, in an attempt to speed things up. I imagined that if he looked at the lines, I could ask him if it was the letter was on the first, second, third or fourth line. As I think back, I think it would have been nicer for him to not have to concentrate on looking at the letters to find them, but I didn't know he was going just then. I had the thought, but didn't let it convince me. Sorry, I know this has nothing to do with you, I was just caught by that line of thought. What I wanted to end up asking you is: Did you have a particular system for the spelling?
 
yes. the letters get broken down into numbers. 1-7.
number 1 is A B C D. number 2 is E F G H and so on.
we had a chart (its all memorized now). numbers 1-4 on one side and 5-7 on the other.
that way if he looked one way, we would know what numbers to start with.
when we get to the number he looks left for yes. then we start with the letters. he looks left for yes when we get to the letter.
this method really confuses alot of people as they think its so complicating. but once it clicks, its very easy.
also, i am very in tuned with him, so alot of times i can figure out what he is saying before he finishes.
also we dont waste time with un needed words. short and to the point.
 
Does your PALS (I know this word and like ih but have never used it before) breathe using a medical ventilator? My father chose not to get one, 7 or 8 years ago, and didn't change his mind.
 
Thank you for sharing the love of your father. Bless you.
 
LizT: Sorry if above question crossed a line. I'm new here, and a bit tired, so I don't always think everything I write all the way through. Also, I'm new here and don't know what types of questions are commonly asked or answered. In other words: Don't answer if you don't want to. By the way, I recognise the to-the-pointness, and the guessing of what he wanted to say. My girlfriend was sometimes better at the latter than me, which was kind of surprising. I think she also played a big role in even introducing the guessing. I think the slowness of my father's disease caused us to not always see what would be the best thing to do with the direction he was heading, like compressing the communication. They only knew each other for a little over a year and a half, but she really changed things.

Lavender: Thank you for thanking. I'm glad that I can, to some extent, do just that. I like that line, sharing my love of my father.
 
This was a beautiful piece for your father. You did very well.
 
No worries! You didnt offend me at all. feel free to ask me anything you like. if its something i am not comfortable answering, then i just wont!
Yes, my PALS has a trache and is on a ventilator. Has been for over 6 years.
 
What a wonderful loving tribute for your father, I am sorry for your loss.

Dana
 
Thank you Gusflower and Dana!

LizT: Might as well be cautious, but I will ask on then: Have you seen the film A Brief History of Time? It is an amazing film about the scientist Stephen Hawking which I never managed to show my father. I would have liked to, but knew it would have been very emotional for both of us. You can find more on it here: A Brief History of Time (1991) - IMDb if you like. Also, does your PALS get to go outside? My father lived in an apartment unsuitable for a person in a wheel chair, on the first floor of a building with stairs, so the only times he was out was when he went to the dentist, and it took him a lot of effort to get there (with the help of a helper and the random driver from the handicap taxi company that would show up that day).
 
This was wonderful. Thank you for sharing it with us.
 
What a moving, wonderful memoir you've shared. Your father and you obviously were very close and I'm so sorry for your loss. Thank you for choosing to tell us about him... a remarkable man.

Ann
 
Thank you, Tomby and Ann, for reading. It's nice to be able to share my thoughts with others.

I miss him a lot. That said, it's not all bad. I have been prepared for this to happen for many, many years, and in many ways it couldn't have gone better with our relationship than it did the last two years of his life. Maybe I will have to revise these thought when I look into his files and journals (which he obviously left for me to read if I want, which I do), but for now I apart from the sorrow (which is definitely there and definitely tough) feel quite good and am convinced that he died close to the way he wanted, given the circumstances.

I plan to spend some time on the forums in other people's threads as well during the coming months, or how long I don't know, but will probably not be here much the next couple of weeks, as exams are closing in on me, and because of my father's death I haven't been following my current course (developmental psychology) that closely. I have about two weeks to read about 800-1000 not that difficult pages, so it's definitely doable, I just need to concentrate and having the internet in the back of your mind does not make concentrating easy. So I will retreat into the libraries with books, pen and paper and hope for the best. I look forward to continue communicating with people here.
 
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