If you left your boots out last night, they were full of goodies this morning.

Because today, the 6th of December, is Nikolaus.

Would you know my name?
If I saw you in heaven
Would it be the same?
If I saw you in heaven

Saint Nicholas is the patron saint of sailors, merchants, archers, repentant thieves, prostitutes, children, brewers, pawnbrokers, unmarried people, and students in various cities and countries around Europe. His reputation evolved among the faithful, as was common for early Christian saints, he lived in the 4th century, and his legendary habit of secret gift-giving gave rise to the traditional model of Santa Claus (“Saint Nick”) through Sinterklaas.

There are a few reasons why today is special in my life. There is, of course, the boot full of sweets I remember from when I was young. There is my Saint’s Day, my ‘Namenstag’, just one day before on the 5th of December – in my younger years a day nearly more important than my birthday. There is the year when most of my family came over from Germany to celebrate with us my mother-in-law’s 80th birthday. And I went to Germany for the funeral of my best friend from college times, Klaus, who died at 43 years of age. On his ‘Namenstag’, St. Nikolaus. He died because he thought he could not carry on.

He was a social worker working with ‘problematic’ kids. They turned up at the funeral and stopped the proceedings to have a few minutes their way. Someone had brought a CD player and then – they played Tears in Heaven.

You will never listen to a song the same way once you have it associated with a particular event or circumstance. I can never listen to that song again without thinking of the cold dark morning in the little chapel in the graveyard.

Pádraig’s days are really busy, at times exhausting. It is a bit like going to work: getting up early in the morning, do your thing, and get back home tired, ready to relax and then get ready for a good night’s sleep.

And that is what it is primarily about: living a life with purpose. Doing stuff, participating, being integrated in a community. The therapy ‘just’ allows that to happen.

I must be strong
And carry on
‘Cause I know I don’t belong
Here in heaven

a

Carl Fredriksen is old. So he is sentenced to sell his house and move into a nursing home. Like a good man. Instead, he escapes at the last minute by tying thousands of balloons to his house. Himself, the house, and a stowaway go Up in the air and on an adventure trip to Paradise Falls in the South American wilderness.

I mean, what is wrong with this guy? Why can he not face the facts? Does he not realise that what he is doing there is highly dangerous and certainly not in his best interest? Does he not see how irresponsibly he is, putting himself and others in danger?

It is society that looks after old and incapacitated people like Carl. There are rules. Rules that are, if necessary, enforced by the Courts in his best interest and for the good of society. Even if he doesn’t agree. Because he is old and has obviously lost all good and reasonable judgement.

Why did Pixar, surely aware of their own responsibility as a huge movie maker, decide to let this deranged old man escape and let him go on this incredibly mad, irresponsible and dangerous adventure trip instead? Do they want to encourage other people to do likewise, “follow their dreams” and probably kill themselves in the process? How is it that they were allowed to make this movie at all at all, show it all over the world, encourage this highly irresponsible behaviour?

Maybe they were just after the money. With a box office intake of $731 million, Up became one of the highest-grossing films of all times. People seem to like Carl’s idea of doing his thing.

Pádraig’s regular dentist retired. We had to look for a new one and found a “special care dentist” on the web who turned out not to practice anymore, except in the Dublin Dental Hospital. They said, Pádraig needed a referral and that there was a one year waiting list. We sent the referral but didn’t get as much as an acknowledgement.

Eventually, we found a dentist in the neighbourhood whose practice is accessible and who saw Pádraig within a few days.

I stayed with Pádraig for the consultation which took a full two hours. The dentist cancelled other patients he had lined up for that afternoon to get the two holes in Pádraig’s teeth fixed. Dentists are generally not people you’d like. But this dentist was incredible. Committed, professional, caring.

We had another good day last week. So good, we decided to go out for a walk and check out how Pádraig would like moving through An Saol’s car park standing up. He immensely enjoyed that. A whole different perspective.

I think we all need that from time to time: A whole different perspective. Doing the crazy, immensely adventurous thing.

We can do things. We don’t have to wait until someone does it for us. If we try, we generally find others who will join and support us on our journey. We can do more and better if we do it together. We have to get Up, accept responsibility, find like-minded people, support each other, and become the change we’re looking for.

The alternative is to live like Vladimir and Estragon and wait forever.

You can’t eat money. Can’t buy me love. Not everything has a Price Tag. Money doesn’t care for me. Neither does the “click-clack” when Vogue Williams closes the box of Fairy Non Bio. Except that Vogue who always has Theodore’s safety in mind sees it differently:

“I make lots of little sounds when I care for Theodore. But there is one really important sound. That click-clack means that the Fairy Non Bio safety lid is shut. So Theodore is safe.”

I am so happy that Vogue always closes that lid. It’s so good to know that Theodore is safe and that we don’t have to worry about him. One person less to worry about. Brilliant. If you don’t do anything else, keep closing that lid for Theodore, Vogue.

Before Vogue explained to the world how much she cares for Theodore, the world only had heard about one other Theodore. 

Theodore Roosevelt.

He had one thing in common with Vogue: both of them said important things about caring. Roosevelt, like Vogue, has been credited with a great quote about caring:

People don’t care how much you know until they know how much you care.

In other words: knowledge is not worth a dime unless you care and you act upon that knowledge, use that knowledge to help others. Knowledge has to be applied to do good. For example, if you know there is a storm coming, you tell everybody to get prepared; if there is a virus, you wear a mask; if you loose an election, you concede; if someone needs help, you help and don’t wait for other to do their job.

Pádraig got some help this week standing and doing exercises. He is doing so much by himself. Just sometimes, equipment he uses needs to be adapted to suit his height. Like IKEA mats under his arms to take some of the weight that otherwise would be pulling his shoulders down.

After many hours of hard work, Pádraig eats more than most of us. He eats better and more regularly in any case. And he is eating food few if any people thought he’d ever get near to, such as nuts. Cashews are some of his favourites.

It gets sometimes lost in the busy-ness of the days: it is hard to believe how far Pádraig has come and how he has inspired people to get to the point where there is a rehab centre for people deemed by many not to deserve rehabilitation at all. Having the An Saol Neuro Rehab Day Centre up and running, working with motivated and experienced therapists and assistants supported by extraordinary equipment is little short of a miracle.

We know how much everybody in An Saol cares, and we care about how much they know.

Yesterday, I got a reminder of the futility of life (if that was necessary). A very good friend from my home town of Dortmund sent me a message about the passing of Fred Ape. He was about six years older than myself. His music was the music I grew up with. He wrote one of the songs that made Dortmund’s folk-rock group Cochise who lived very near to where I went to secondary school.

They were singing about justice, transparency, solidarity. One of their most famous songs, written by Fred, was “Smoke Signal” (“Rauchzeichen”).

The song is, they always explained, based on an ancient Cree Native Indian Prophecy.

“Only after the last tree has been cut down / Only after the last river has been poisoned / Only after the last fish has been caught / Then will you find that money cannot be eaten.”

How relevant this still is today is incredible. It made me think back some decades when it seemed perfectly possible that the good guys would be winning. When I felt carefree. Nothing really bad would ever happen to me. There was no end in sight. No rush. No need to deal with difficult people.

Rauchzeichen – Cochise

Wenn ihr den letzten Baum zerstört
Dem letzten Fluss die Klarheit nehmt
Den letzten Wilden habt bekehrt
Der letzte Vogel nicht mehr singt
Die letzte Straße angekommen
Der letzte Wald zum Parkplatz wird
Der letzte Krieg endlich gewonnen
Der letzte Strand mit Öl verschmiert

Werdet ihr erst dann einseh’n
Dass ihr euer schönes Geld
Auf der Bank nicht essen könnt –
Welch Menge ihr auch nennt?

Wenn ihr den letzten Fisch gefangen
Die letzte Erde aufgeteilt
Die letzte Bombe hochgegangen
Die letzten Ernten sind verseucht
Die letzte Mutter Kinder liebt
Der letzte Mensch durch Folter stirbt
Der letzte Gott den Segen gibt
Der letzte Hitler für sich wirbt

Werdet ihr erst dann einseh’n
Dass ihr euer schönes Geld
Auf der Bank nicht essen könnt –
Welch Menge ihr auch nennt?

Wenn das letzte Meer voll Abfall ist
Die letzte Erde ausgehöhlt
Der letzte Tanker langsam bricht
Das letzte Paradies zerstört
Die letzte Menschlichkeit besiegt
Das letzte Hochhaus hoch genug
Die letzte Lüge Beifall bringt
Die letzte Blume fault im Wind

Werdet ihr erst dann einseh’n
Dass ihr euer schönes Geld
Auf der Bank nicht essen könnt –
Welch Menge ihr auch nennt?

Werdet ihr erst dann einseh’n
Dass ihr euer schönes Geld
Auf der Bank nicht essen könnt –
Welch Menge ihr auch nennt?

Ape, Beck & Brinkmann
View All Credits 

Harmonica: And Frank?
Snaky: Frank sent us.
Harmonica: Did you bring a horse for me?
Snaky: [Chuckling] It looks like we’re… it looks like we’re shy of one horse!
Harmonica: You brought two too many.

They were full of confidence, laughing at that one lonely Harmonica. But now, they begin to look worried. – As it is to be expected, a few seconds later, they are dead.

It’s the opening dialogue of Once upon a Time in the West. And it only happens after a seven minute long opening sequence with no words spoken at all. Do dialogues come any better than this?

The music (by Ennio Morricone) and the “shooting” of the 1968 movie (by director Sergio Leone) are as good if not better than the acting and the story line of this “spaghetti western”. It’s full of great one-liners, some completely non-PC nowadays, in a movie that follows Harmonica on his mission. He is a man of few words. He has focus. He has unfinished business. And a harmonica.

While Frank (and the viewers) are getting hints during the movie, we (and Frank) only learn at the end why Harmonica came to Flagstaff and after Frank. Eventually, Harmonica shoots Frank and stuffs his harmonica into the dying Frank’s mouth as a reminder of what he had done to him and his brother years earlier. And then? He rides into the setting sun. He’s done.

Leone liked to tell the story of a cinema in Paris where the film ran uninterrupted for two years. When he visited this theater, he was surrounded by fans who wanted his autograph, as well as the projectionist, who was less than enthusiastic. Leone claimed the projectionist told him “I kill you! The same movie over and over again for two years! And it’s so SLOW!” (from Wikipedia)

We had a few highlights and amazing “firsts” last week.

For the first time ever here, someone other than myself did a manual transfer of Pádraig (from therapy bench / plinth to wheelchair). It was absolutely brilliant. For me, it was an icebreaker.

And that was just the beginning.

We figured out how Pádraig could use a table standing up.

He won an arm wrestling competition against a formidable opponent.
(This is a snap shot of the arm of the opponent:)

He rocked like a waggon wheel and a spaceman at the turning point.

Last night was Halloween, the time when the dead become alive and go on scary missions. It’s scary, but it’s also great fun.

We’re moving slow. Maybe like dead men walking. Or like Harmonica. Maybe we’re scaring people at times. But we have focus and determination and fun. Unfinished business. And we won’t rest until that is done. One day, someone will look back and tell the story. “Once upon a time…”.

This week, Pádraig received the most beautiful bunch of flowers.
Ripple in still water.

He is moving and controlling his legs again much better, even the right leg,
lifting them up to help
when we are putting the footrests on his wheelchair.
They are back in action.
Following the problems he had with that right leg over the past year and a half,
this is a big deal.
A very big, a very beautiful deal.

He is (again) cycling the MotoMed himself without the engine kicking in,
keeping a really good balance between the left and the right leg.
Unthinkable for many months.

.

Pádraig is alive and kicking and tremendously enjoying his regular exercise here in the house and in An Saol’s Neuro Rehab Centre, inspired by him.
This, too, is a big, a very beautiful deal.

Pádraig has been assumed to be close to death, to have been better off dead, to be dead.

And that is the answer to some of my most burning questions: why is there no place, role or provision for him, and others like him, in society? Why does society not offer him, and others like him, the same respect and opportunities as others to live their lives? Why are concepts such as equality, integration, and participation not applied to him, and others like him?

“Dead people receive more flowers than the living ones because regret is stronger than gratitude”, Anne Frank wrote many years ago.

I don’t know anybody who is more grateful for their life than Pádraig. So am I. Tremendously grateful for his life. And so is the HSE. They sent him the most beautiful bunch of flowers this past week, thanking him for his participation in their video promoting the 2015 Assisted Decision Making (Capacity) Act and his contribution to their recent event launching the video.

Here is the deal.

People and society cannot continue to look at Pádraig, and others like him, as if they were dead, almost dead, that they would be better off dead, that they should be dead, even Grateful Dead.

We need to start sending more flowers to the living. Create ripples in still water.

We need to be with the living. 100%.

“From a Distance” is one of the most beautiful songs. Nancy Griffith sings it with one of the most beautiful voices. The world looks blue and green, there is harmony, there is a voice of hope and peace, and God is watching us from a distance.

Distance cancels out the small, little things. The fighting, the differences, the guns, the bombs, and the disease.

Distance is good because it gives us the bigger picture. We don’t loose the wood for the trees. Distance helps me to find a way out when I’m stuck, to find a new direction.

There was a time before the summer when I didn’t know what to do or where to go. There was the summer of distance, distance in many different ways. And now there is the autumn of “going forward”, even in difficult circumstances, but going forward, with confidence and determination.

We now know that there are steps to be taken, “going forward”. (Oh, how I hate that phrase when politicians use it as an empty shell!)

Pádraig has been “going forward” every day, leading the way.

“Distance” is no longer what it used to be. It’s no longer a choice. It’s necessary for survival. When you don’t keep it, it can make you sick and can kill you. But when you have to keep it unnecessarily, “just” because of your circumstances, it can make life, at a minimum, quite miserable.

It has been the official ambition of the Irish Government for the past nine years, since 2011, “to facilitate community living for all people with disabilities – regardless of age or severity of disability. More than this, the UN Convention on the Rights of Persons with Disabilities, which Ireland has ratified, recognises institutionalised facilities as a violation of human rights.” (Irish Times, 20 May 2020)

Yet, today, more than 1,300 young people with a disability are still looked after in a nursing home. Because of the pandemic, they are now locked away with no visitors and no direct contact allowed.

In addition, one sad reality during the pandemic has been that “a high proportion of deaths in Ireland (and indeed right around the world) have taken place in care homes. Living in these places makes it intrinsically difficult to physically distance oneself. (…) Living with any concentration of people categorised as “vulnerable” to the disease is a disaster waiting to happen”, say the authors, Gerard Quinn and Ann Campbell, in the same article.

And so, they say, “the Taoiseach rightly reflected on a future where we might have to rethink the wisdom of such settings and the wisdom of public investment in them.”

The Lady in Red must have spent hours getting ready for her visitors. Because she could. And wanted to look her best. She looks amazing. Her visitors more than appreciate her meticulous preparations. They smile, they wave, they take pictures.

She isn’t in heaven and she isn’t getting ready for Dancing Cheek to Cheek with Fred Astaire nor anyone else. She is in a nursing home, greeting her relatives from a distance.

Despite the appearance, this ain’t a happy picture. From neither side of the window. The smiles, the camera, the waves, the distance, are hiding the details of the misery. The distance here is imposed, it’s not helpful. The lady in red, as all the young people in nursing home, should be able to hug their family, to feel the warmth of their skin, to smell their breadth, to touch their hands – not the bold window.

How much longer will we allow the violation of the human rights of young people with brain injuries? How much longer will we allow these young people to be exposed to “the disaster waiting to happen” to them during this pandemic? How much longer will these young people be allowed to be seen only “from a distance”, through a glass window, by their families with whom they should be living in one household, safe, and “from a distance” from the pandemic brought into closely congregated settings?

How much longer will the government continue to fund these human right abuses instead of viable, appropriate, long-term alternatives?

Sometimes I think God could look a little closer, look not just look from a distance, to see the grey, hear the dissonance, and feel the desperation.

John Lennon would have been 80 years old last Friday.

Had he not been shot dead 40 years ago.

Imagine.

Gimme some truth

Which year did he write this song again???

Sounds to me like as if there’d be a good chance he’d be shot a second time one of these days had he survived the first attempt to kill him and had he continued to sing that kind of song.

This past week, Pádraig was back on his feet and back on the Lokomat.

I keep imagining. – Could Pádraig have been spared more than a year of deeply troubled nights and lack of sleep and what must have been at times excruciating pain?

A ‘good night’ before the intervention he went for recently meant he had slept continuously for a few hours, maybe five or six, and that was a rare occurrence. Most nights were not ‘good nights’. During those nights he slept maybe one or two hours, woke up for an hour or two, moved around in the bed in pain and went back to sleep for another one or two hours, because of sheer exhaustion.

We had to protect the sides of his bed with thick foam covers and close the gaps between the mattress and the bed side protectors with specially made foam covers to prevent injuries.

It must have been close to unbearable for Pádraig to be unable to get a good night’s sleep. It was extremely difficult for anybody staying with him for a night to see him struggling so hard, being unable to rest, pulling up his legs, especially his right leg, almost up to his chin, twisting his legs around each other, over time being unable to stretch out his right leg anymore because these movements had caused his right hip to sublux, pushing the head of the right femur (partially) out of the socket.

We asked everybody we could think of. Described what was happening.

Eventually, we decided that we had to go on a long journey to get Pádraig the help he so desperately needed.

Following his discharge from the rehab hospital in Burgau, we have been staying with Pádraig now for more than two weeks during the nights. He goes to bed in the evening. We help him to turn around twice or three times during the night. He wakes up in the morning. After a really good night of at least eight hours, and often 10 hours or more of sleep.

The difference between ‘before and after’ could not be bigger.

I keep imagining. What would have happened to Pádraig had we not taken him to see the specialists in Burgau and Munich, had we allowed his condition to gradually deteriorate? Had he not eventually received the necessary help by people who cared, and for whom Pádraig has the same right to physical integrity, to his health, as you and I? Who treated him with ‘dignity and respect’? Who took a ‘patient centred’ approach? Who did not discriminate because of an existing condition?

Is not knowing as bad as not acting despite the knowledge?

I’m sick and tired of hearing things
From uptight, short-sighted, narrow-minded hypocritics

John Lennon sang nearly 50 years ago. Maybe Heraclitus of Ephesus, the Ancient Greek, pre-Socratic Ionian philosopher, got it wrong when he found: “Panta rhei” – everything flows and everything changes?

It’s 40 years ago this month that I met my soul mate in the Calle Rúa Mayor in Salamanca. Yesterday, 35 years ago, we got married. One day, we’ll go back there. Some people will always have Paris. We’ll always have Salamanca.

Sounds like ‘something that floats’. Doesn’t it? And the word came to my mind when I thought of the boat we’re on tonight.

But it means something entirely different. As I learned yesterday, when she was diagnosed with the China Virus, together with her husband.

Anyways… in a land far, far away and

more than 40 years ago someone introduced to and played the classic “On the road again” for me (without the harmonica and guitar solos:), somewhere in Franco’s Spain. He was the real deal: flowers in his hair and a VW Minibus to move around. The type of person who would have sang “Alice’s Restaurant” had he not been German but American. And if we’d have had more time.

I was impressed anyways. It was my first trip abroad on my own and I had met hippies only in The Drifters by James A. Michener.

Even though he used just two chords and just did the chorus it was super cool.

Tonight we’re on the boat again.

Four months later. A few t-shirts and a pair of shorts did the trick. Like that summer in Spain. And like during that summer in Spain, all turned out well, even though it wasn’t always easy. And as at the end of that trip down South that year, after all these months I am happy that it is over.

Last week, in Pforzheim, Pádraig was back in the Lokomat. And he really liked it.

We practised and tried out different ‘settings’ for him, to support his thorax from the front, protect his back with a towel, his legs with a layer of neoprene, and keeping his head up with a strap.

By the end of the week, I felt comfortable that, with some help, I could get Pádraig in and out of the Lokomat in a reasonable time and allowing him to have the exercise he so urgently needs.

We had a few sessions walking with Pádraig the width and length of the therapy room in a much more hands-on way as well, without the help of any sophisticated equipment. And there was a smile on Pádraig’s face – so different from the pain he felt just a few months ago when we were in Pforzheim thinking his hip and leg could get fixed with therapy.

During our week in Pforzheim we talked to some families about Pádraig’s procedure. Guess what. Almost all of the families we talked to, three of them, had a member who had undergone a similar procedure. Some more than 10 years ago. Not necessarily all involving hips but all involving a similar procedure. How is it that if this type of procedure is so common, at least in Germany, as it seems to be that we had never heard of it although we asked every specialist, doctor, therapist and people in the know? The world is full of mysteries.

Apart from hard work, we also had some fun. COVID limited fun, slightly out of season. It looked exactly like a Christmas market, down in Pforzheim city centre. Even the weather had adapted. What was missing was the crowds.

The summer is definitely over. Bring along Christmas.

Really?