Edith

“Our painful experiences aren’t a liability—they’re a gift. They give us perspective and meaning, an opportunity to find our unique purpose and our strength.”

Writes Edith Eger in her book The Choice – Embrace the Possible.

She is 93 years old. When she was 16, in 1944, she was deported to Auschwitz together with her parents and her sister. She survived and published The Choice in 2017 and The Gift in 2020, relating her story of survival and the lessons she learned from her experience. She emigrated to the USA, became a friend of Victor Frankl, received a PhD in Clinical Psychology and works as a psychologist. She believes that while we cannot control what life holds in store for us, we can always choose how we deal with it. The most important question is not why me? but what now?

Pádraig continues with his visits to the Hyperbaric chamber, breathing oxygen at the same pressure one would experience 10m below water.

Each visit lasts just over an hour and there isn’t much happening in that chamber. So we play a finger game.

With one finger. And then the other. It creates a connection and makes us both smile.

The weekend is quiet. On Saturdays, there are no carers, there is no schedule determined by people coming and going. Time to relax.

It is anything but boring. It’s nice, calm, and gives us time to chill out. Probably hard to understand for those who fear for their mental health because they have watched Netflix back and forth, as well as the last episode of the last season of the reality show The Whitehouse.

Over the last weeks two dear people in our life passed away.

Mary Geran was Pádraig’s, his sisters’ and Ireland’s most iconic swimming coaches. She sadly passed away on 11 January. She coached Pádraig when he was small (he was ‘small’ at some stage) and again, more recently and for the last time, with her same unmistakable, distinct voice from the pool side, when he came back to Dublin after his accident, in a pool especially kept open for him by his former coaches, Mary and her colleague and good friend, Patricia, with his sister and myself helping him in the water.

Her funeral had to take place in private because of the current circumstances. But, together with old friends, Pádraig said his good-bye in front of her house. Watching the cortège passing by and talking about Mary, brought tears to his eyes. They changed into a huge smile when we stayed on for a few minutes to say ‘hello’ to old friends he hadn’t seen in years – all distanced and with masks but well in sight.

Ni bheidh mo leitheid aris ann. With Mary, a whole generation and character of people is disappearing. The pool, the kids she taught and coached, were her life. More important than her commitment to achieving the best possible results in galas and competitions, was her commitment to the welfare of the kids she cared for. She was a tough coach with a huge heart. And a great sense of humour. The likes of her will never be seen again.

It was my dream to sail around the world. Unfortunately, I failed to convince my family that this would be a great idea and an incredible adventure. Except for Pádraig, who experimented with his Dreamboat. He would have loved the journey. He wrote the most beautiful note telling me that, after much thought, he had figured out how we could organise that fantastic trip and how I could realise my dream.

Again, unfortunately, I was the stupid, ‘realistic’ adult, too constraint by all sorts of ‘practical’ issues and ‘good, solid’ reasons why this was a beautiful plan but not much more.

Two months before I turned 50, I grabbed the opportunity to join a small former hering boat turned sailing ship, its Dutch owners, a family of four, and some random crew of 12 – not to sail around the world, but to cross the Atlantic as part of the 2009 Tall Ship Challenge.

A few days ago, I heard that Peggy, the wife of my mate James on that incredible adventure, passed away last week. I met James first when I boarded the Tecla in Halifax, the day before we were going to sail across the Atlantic. We spent the next few weeks together on our four-hour watches, from 2-6 am and pm. One early morning, when we went back to our bunks, cold and wet from the ferocious North Atlantic storm outside, James told me that he had decided that next time he was going to cross the Atlantic, it would be with his wife on the Queen Elisabeth. We laughed our heads off at the ridiculous thought of it. (Only a couple of years later that thought became a reality.) When, weeks later, we eventually made it into Belfast harbour, Peggy was there at the pier, welcoming James back on firm land. She had worried a lot about all that could have happened to him and was overjoyed to have him back. The couple spent some time in Ireland with their children and visited us in Dublin. When I heard that Peggy had passed away following a terrible fight with cancer, I could only imagine what pain and sense of loss James must be going through.

Nobody can avoid the pain and suffering life inevitably confronts us with. One terrible pain cannot be compared with another terrible pain. Their is no pain league table. But I would agree with Edith Eger that we have a choice to ask ourselves why me? – or what now?

One is the question of a victim, the other a question of a survivor.

Adapt

There are some really iconic images. This is one.

It’s not staged. There is no expensive and artistic setup.
This is real life. As real as it gets.

You might have to look closely at the picture above.

What I want you to ask yourself is: If you had to plug in a two-pronged plug into one of the available sockets which one would you choose?

On the left, there are two network sockets which you surely wouldn’t try.

That leaves two (Irish) standard sockets for three prongs, with one having an adapter for international plugs.

The temptation to follow the well established regime of plugging a plug into a socket must be enormous. Even if the plug is not really made for that socket you make it fit. Because that is what you do: you put the plug into the socket. Never mind that stupid adapter.

There is a noticeable stretch in the evening now. Days are getting longer and a little brighter. Pádraig and I went for a good walk into the Botanic Gardens today.

He was supporting his head with his left hand as we went into the “Wild Ireland”, a part of the Botanics introducing visitors to the generally well-kept and meticulously planned Gardens to the Wild. A bit of a contradiction but still a great experience, especially if you’re living in the middle of the City. We saw this huge tree with what looked like tons of nests hanging from it. Are those really nests or are these some type of plants using the tree as their host?

Pádraig is cycling his MotoMed better than ever before. Up to 40 rounds per minute, against some resistance, for 45 minutes, a distance of nearly four and a half kilometres, using both of his legs in nearly perfect equal measure.

While he is cycling he is eating and drinking (for energy) and when he is finished he lifts both of his feet out of the pedals.

This is keeping him so fit that it makes me feel jealous. Yes, he is young and, before his accident, was always fitter than I could ever dream to be. And if I think of it, why should that now be different? Because he had an accident seven years ago?

Pádraig has adapted to his condition, the way he is.

My guess is that he could easily do the ironman distance of a 180.2km on his bike, even if it was over a number of days. And he could run the ironman distance of 42.2km in the Lokomat, over a similar number of days. The 3.9km of the ironman swim would have been the easiest part of the triathlon challenge – if swimming pools were open or if we lived on an island surrounded by warm waters and not by the Atlantic and the Irish Sea.

It’s not always the smartest thing to follow the usual regime and practice. Sometimes you have to adapt to get results and motivation and meaning. Or the right socket.

I want to think about that one a little more.

Joan

There but for fortune, love is just a four letter word, the night they drove old dixie down, Joe Hill, diamonds and rust, we shall ovedrcome – definitely.

She sang at the Newport Folk Festival in 1959 for the first time and, ten years later, in 1969, of course, in Woodstock.

It was she who made the songs of her young, a little rough looking and completely unknown friend, Robert Zimmermann, or Bob Dylan, world famous. She mostly sang covers and it was he who gave her almost supernatural voice songs that expressed her thoughts and feelings. In later years, Bob talked about his relationship with Joanie, and invited her to join him on the Rolling Thunder Review, documented in the 2019 movie by Martin Scorsese.

She was eighty yesterday.

She gave a concert in Dortmund’s Westfalenhalle, I forget the year, where I experienced her absolute magic. It’s one of Europe’s biggest indoor venue. She sang, alone and completely solo, playing the guitar, in front of 16.000 people, completely stunned by her.

We were in the An Saol Neuro Rehab Centre one day last week getting ready to go, when Pádraig decided to continue exercising. In and with his wheelchair.

He started doing it all on his own and then, when we encouraged him, continued doing it. No cramps, contractures, or involuntary movements. This was slow and controlled and voluntary. He did this after four hours of therapy. Was he tired or exhausted? To me it looked like as if he was just ready to get going.

It proofed to me that we can be very wrong when we are trying to protect people like Pádraig by not challenging them, by going easy on them, by assuming tiredness when there is energy that needs to be put to a purpose.

We will overcome one day. Because we will continue the Dreamboat journey, being lead and encouraged by people who for many look so vulnerable and desperate that they nearly would prefer to forget them altogether.

Here is to Joan and her eightieth Birthday, her great voice and unbroken spirit.

We will overcome. One Day.

Who

Joe Biden and Kamala Harris were named the Time Magazine’s “Person of the Year“. Who is your person of the year?

The Time Magazine made clear that the nomination is never only about the past, but also about the future. Joe Biden said that he is seeing “an outpouring of joy, hope, and renewed faith in tomorrow to bring a better day”. Kamala Harris frequently quoted her mother who told her “you may be the first to do many things, make sure you’re not the last”.

I found it incredibly difficult to decide who would be my Person of the Year. In any case, it had to be a nomination relevant for the future.

There are the therapists and doctors in Burgau, Munich and Pforzheim who recognised what caused Pádraig’s terrible pain in his hip over the past year and who were able to help him with a relatively small intervention so that he now can move his right leg again and can sleep through the night.

There are my colleagues in the An Saol Foundation who kept our Neurological Rehabilitation Day Centre open and running – after a months’ long closure from March to July.

There are the people who never stop working for the care and the rights of people with neurological injuries or conditions.

You can listen to some of them on the website of the An Saol Foundation.

Mags Rodgers is the Executive Director of the Neurological Alliance of Ireland; Ken Duffy is the co-owner of the Little Sport Bike Shop in Dublin who arranged sponsorship for a fundraising cycle; Professor Andreas Bender is the Clinical Director of the Therapieszentrum Burgau (near Munich); Kieran Loughran is the CEO of Headway Ireland.

My person of the year, though, has to be Pádraig who not just inspired all of us in the past but motivates us all to keep going into the future.

Below is one of the most amazing short videos of him in a park near our house. The video is a year or two old and still absolutely amazing. When we were just about to leave, Pádraig showed us what he can do with Dublin City Council’s exercise equipment.

So here is to another year, another decade.

Like Joe, we can see “an outpouring of joy, hope, and renewed faith in tomorrow to bring a better day”. And we will follow Kamala Harris’ mother’s advise. We’re “the first to do many things” and we’ll make sure that we won’t be the last.

A sign of things to come! Let’s just sail and have some fun. Get on board.

Dreamboaters, we’re looking at the stars

Ludwig

Tatatataaaa – Tatatataaaa
Each of his symphonies had a name. The Fifth had the Fate Motif, it was the “Schicksalssymphonie”.

He was born 250 years ago this year. The Fifth was performed for the first time on 22 December 1808 when Ludwig van Beethoven was in his thirties and fighting increasing deafness. At the time, Napoleon had occupied Vienna and the world was turned upside down.

E. T. A. Hoffmann wrote about Beethoven’s Fifth that the music “sets in motion terror, fear, horror, pain, and awakens the infinite yearning that is the essence of romanticism”. For many, he represents the romantic ideal of the tragic artist who defies all odds to conquer his own fate, the triumph of the human spirit.

In the words of Antoine de Saint-Exupery: “What saves a man is to take a step. Then another step.”

Here are some steps Pádraig took, some of the people he met and remembers on some of the journeys he made over the past few years.

He will continue on his journey in 2021. Take a step. Then another step.
With all of us. His Family. His Friends.
Defying all odds to conquer his fate.

A very happy 2021!

Jesus

The one who walked on water.
The one whose birthday we are about to celebrate.

There is no getting away from it. Christmas is definitely coming. And definitely in the next few days. They tried but didn’t manage to postpone it. The date, the winter solstice in the Roman calendar,  has been a very special one for thousands of years. It is a day that has changed the world every year, again and again. And no matter what happens, the world will not change it.

The celebration of the birth of Jesus is, of course, a celebration of a new beginning.

That new beginning has never been needed more urgently than today.

It took Jesus about 30 years before he managed to cross the Sea of Galilee on foot. It’s a lot to ask, but we will need a bit of that approach in the coming year.

It is the first time ever that attendance at Christmas Day mass was contingent on winning a seat in a parish-wide lottery. I need a sign.

A lot has been happening in Pádraig’s and in my life in the past week.

Last night we went into town to see the Christmas lights and all the hustle and bustle.

O’Connell Street was a beautiful as ever. The tree and crib so nice – though we were wondering why the shepherds had fallen at the back and how it came that the Three Kings had already arrived? The GPO had the most amazing light display on it and Santa was waiting for customers to give them a ride not on his sleigh but on his cart and horse.

Pádraig got a four-legged visitor that was being minded by one of his sisters. The two of them got on so well with each other that we started to think again about the possibility of a companion dog for Pádraig. We need to figure out the mechanics – but that should be possible. And then we would need the right dog…

Pádraig continued with the iPad-based challenges. Have a look at the sequence of numbers and see how long it takes you to name the next number in that sequence. It’s not rocket science, but there is a lot of different types of cognition involved when you think about it.

We put up a small tree beside Pádraig’s little fountain in the garden, in front of his window. Amazing that it was possible to sit outside that night, even after the sun had gone down, in the dark, for more than just a moment. It was so mild.

Pádraig received a chocolate Santa Teddy at the Christmas get-together in An Saol last week, as did each of the other day clients. He had a brilliant hour or two of Christmas Music, a small present and ham & turkey. Although it was all ‘distanced’ with a lot of precautions taken, it brought the true spirit of Christmas to everybody around.

When returning from the supermarket one day, I saw that someone must have anticipated my passing by, offering me his help. Like Bruce Almighty, I desperately need a sign. Yes I do. Like Bruce, I could do with some guidance.

But somehow I have the feeling that God will not share his phone number with me as he did with Bruce. My challenges will not be solved by a phone call to the man whose earthly, made-man birthday we are about to celebrate.

Instead it will be the happiness, joie de vivre, the joy in the eyes and the smile on the faces of our friends sharing An Saol’s life and living adventure that will guide me. Curious about what the New Year will bring and how we will be able to shape it.

Walking on water.

A big wave and best wishes from Pádraig to all his friends,
wherever they may be this Christmas time.

Nollaig shona dhuit

and in 2021 –

May the road rise up to meet you.

May the wind be always at your back.

May the sun shine warm upon your face;

the rains fall soft upon your fields and until we meet again,

may God hold you in the palm of His hand.

Angela

Angela Merkel, the most powerful woman in the world, ahead of Christine Lagard and Kamala Harris, went far beyond the Forty Shades of Green. Being the woman she is, she stuck with her style but went all out on the variations. For all colours. For Pantone.

Pantone is the company that developed the Pantone Matching System, allocating numbers to colours, a reference for everybody who works with colours.

They just revealed their colour(s) of the year 2021:
Ultimate Gray and Illuminating.

“Two extremely independent colors highlight how different elements come together to express this message of strength and hopefulness,” said Pantone VP Laurie Pressman.

If you are curious about how colours work you might be interested in ‘A Cultural History of Colour: The Modern Age’ by Sarah Street and Anders Steinvall.

There is a chapter in there, ‘Colour Power & Identity’, that “explores some of the ways that colour is used as a form of code intended to convey meaning linked to identity, persona, presence and power within a broader lexicon of visually-based signifiers.”

Are you feeling blue from time to time? Or do you sometimes see red? Feel yellow mellow? Do you see things in either black or white? Or do you see shades of grey? Are you all for going green? Can you see a silver lining? Do you love white mountains high? The dark blue sea? Some car insurance companies apparently charge more for red cars. Some people swear that violet is good for migraine. Therapists use green to relax clients suffering from anxiety.

I have no pictures of Pádraig this week. He has been doing his thing. And in a really brilliant way. I often wonder how he does this. He keeps going, surprises everybody with his wit, his humour, his incredible determination, his endless patience with the people around him.

How does he do it?

Why have I never asked him? Not necessarily and only to get the answer, satisfy my curiosity. But to let him know that I notice, every day, his strength and calm fighting spirit. Pure Zen.

He seems to have found the impossible: a way to live with this incredibly humongous change in his life. There are many moments, there are times, when that change must be nearly impossible to grasp, I am sure. But overall, he has found the balance I am struggling to find.

Christmas is just around the corner. Things will slow down even more. We’ll take days off. We’ll have lie-ins. We won’t have to get up at what often feels like the middle of the night to be somewhere at a certain time.

It’ll be a time when there is less pressure. Less heat. In anything we’ll do, or see, or experience. And then the nights will again be getting shorter and the days longer.

I wonder whether he’ll remember the time when he was in the hospital. He was in the hospital and we stayed at the Atlantic on Christmas Day, my favourite place in Hamburg. We went up the elevator to go to bed and shared the lift with Udo Lindenberg and his partner. We left him a copy of the ‘Dreamboat’ CD at the reception the next day. Pádraig didn’t see any of this. Though one winter, we went back with him to the Atlantic to show him another side of Hamburg.

There are always two sides to everything. The grey side and the yellow side. Not just in the COVID year. We don’t always see the bright side. But it’s always there. And what is more: we can choose to walk on the bright side of the street, out of the shadows. We don’t have to be at the dark end of the street, hiding. We can get from that dark end of the street to the bright side of the road.

You probably know Dido’s great song, White Flag. White is, of course, the colour of surrender. Her point is that she won’t.

I will go down with this ship
And I won’t put my hands up and surrender
There will be no white flag above my door
I’m in love and always will be

I am all with Dido on this one.

Klaus

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

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Lauenstein

The German Lauenstein brothers won an Oscar for the best animated short in 1989, Balance.

It’s short enough to watch it.

It ends by all but one individual having fallen or been pushed off a platform floating in space. That one individual stands on one edge of the platform, the treasured music chest they have been struggling for on the other. The individual has eliminated the competition but cannot get to the chest.

He has to maintain the balance between himself and the chest in order to survive.

I couldn’t find online the “balancing act” sequence from National Treasure – Book of Secrets that was directly inspired by Balance.

There is a problem with balance: to maintain it sometimes you have to forgo what you yearn for.

We had a quiet Saturday yesterday.

We were talking and taking it easy.

Then we tried whether Pádraig could move his chair himself. Even over a short distance. Nobody likes to be pushed around all the time. Being able to decide independently when and where to go is huge.

He had been able to do this some time ago, of course. But then, while he was struggling with his right hip, this was too hard for his legs. But now he moved himself again.

First forward.

 

And then back.

 

I don’t think I can fully appreciate the sense of satisfaction, Pádraig must have got out of those short but independent moves. There is promise there. The promise to be able one day to go longer distances. To go where he decides he wants to go to.

We tested the outdoors. Getting ready for the pre-Christmas lowering of visiting restrictions and possible outside visits.

Someone with enough foresight had given this heater to Pádraig as a birthday present last May. It’ll come in really handy over the next few weeks and months, when people will hopefully be allowed to visit again – outside, with masks, and keeping their distance, of course.

I have been thinking about how to deal with really difficult situations. And ‘balance’ is what I came up with as the one thing that has to be at the centre of all considerations. When life gets out of balance we’ll eventually fall off the cliff.

Balance implies that we might need to give up something that is really important to us. That makes ‘balance’ somehow less attractive.

Why not have it all and have it now? Is balance not boring? Are compromises not for corrupt politicians? How can you ‘balance’ between oppressors and the oppressed? Should the killers be remembered on the same memorial wall as those they killed? Are there situations when it is worth risking to fall off the cliff, rather than trying to keep the balance?

The answer could be that risking to fall off the cliff means risking everything. That fall would mark the end.

Carl

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.