Rainbow

The way I see it, if you want the rainbow, you gotta put up with the rain.

Dolly Parton

We saw this rainbow when we were driving home, up Drumcondra Road. And while I wouldn’t dream of correcting Dolly, this time it didn’t even rain. It was just beautiful.

The rainbow, its colours, variety, and beauty, has been used as a symbol by many, from ancient mythology to modern equal rights campaigns. Some look for the pot of gold at its end, a girl from Kansas just wanted to get over it and get to the place where trouble melts like lemon drops.

Pádraig went to this year’s first Patrick’s Day gig in St Patrick’s College in Drumcondra last week. It was a beautiful day and an absolutely brilliant lunch time concert. Nearly a dozen very accomplished traditional musicians played the most enchanting ballads and uplifting reels and jigs.

With Patrick’s Day coming closer, days are getting longer, trees begin to blossom, and the first flowers appear around the place.

I listened to someone talking about the idea of fractals. As Jack Challoner put it in the article he wrote for the BBC on fractals: “Unfortunately, there is no definition of fractals that is both simple and accurate.”

He quotes the genius who coined the word, the Polish mathematician Benoit Mandelbrot:

“Clouds are not spheres, mountains are not cones, coastlines are not circles, and bark is not smooth, nor does lightning travel in a straight line.” 

Challoner concludes that the chaos and irregularity of the world – that Mandelbrot referred to as its roughness – is something to be celebrated. That it would be a shame if clouds really were spheres, and mountains cones.

My take on fractals is that what might on the surface appear to be simple, singular and well defined, is, in reality, often just a distant view of something that, at a closer look, is quite complex, multiple, and chaotic. Yet, there is system in the chaos. The multiple layers, the complexity, are made up of an endless number of similar-shaped objects: fractals.

A bit like the world and our lives: from a distance, the world looks blue and green, and the snow capped mountains white. There is harmony, we all have enough, and no one is in need. There are no bombs, no guns, and no disease.

Look closer and it becomes clear immediately that war, bombs and guns, hunger and disease, injustice and cruelty are all around us.

There are days when I’ve had enough of the complex, the chaos, and the irregularity. Of injustice, cruelty, wars and bombs. When I just cannot celebrate that roughness. When I need to see the world blue and green, and the snow capped mountains white. With people living in harmony.

When I want to enjoy the rainbow without the rain.

Those are the most beautiful moments in my life.

Being able to share them with the ones I love makes it all worth it.

Experience

Be brave. Take risks. Nothing can substitute experience.

Paulo Coelho

The world remains a scary place.

Who remembers COVID? Now it’s Ukraine.

There are situations when right or wrong cannot be used to justify your actions. Invading other countries and killing people is wrong. Apart from the destruction, misery and death it brings with it, it creates more problems than those starting the fighting said they wanted to resolve.

I’m old and I’m German. Believe me.

Did I say that a friend kinda encouraged me to register for a few runs, including a (short) triathlon? Being able to run suddenly moved up to a whole new level of significance.

Pádraig continues to exercise. His hip is slowly getting back to where it was before it developed some serious problems about 2 or 2 1/2 years ago. Lying on his back and with a little help from his friends he is again able to lift it up from the ground, four fingers high.

Pádraig continues to enjoy the longer and brighter days.

Nothing like a walk along the sea front on a good day.

On Sunday night, he went to see the Lumineers in The Point. I think it’s now called the Three Arena.

He really enjoyed the concert and himself. One of his carers had had the idea, bought the tickets, and accompanied him.

Apart from the concert itself, it must have been some experience to attend a concert without another family member, for the first time in nearly nine years. I think it was a great night for the two of them.

Were we nervous?

While the Lumineers were playing across the road, we had dinner in what you might have seen on TV as the location for the First Dates programme. Food was the least important item during the two hours or so we were waiting for the gig to finish. We were watching our phones all the time and when we didn’t, we tried to figure out how they had adapted the layout of the Coda Restaurant in the Gibson Hotel to suit the show.

The trouble started as the car nearly disappeared in a cloud of smoke when I turned on the engine to collect Pádraig. The engine didn’t run smoothly and took about 15 minutes to recover from whatever had happened. Maybe it wanted to remind us that we should start looking for a replacement.

We got back home safely and the car works as if nothing had ever happened.

I am trying to put things into their place. Do what is right.

On good days, I can feel and see a balance. That’s when life is good.

We learn nonstop. Through experience. Taking reasonable risks at each step of that learning experience.

Would that be a way to make the world a bit less scary?

A bit more caring?

Choices

Should I kill myself or have a cup of coffee?

Albert Camus

He looked like Humphrey Bogart, terribly attractive. He could have become an actor, but he didn’t. Instead he became one of the most popular voices of existentialism, a philosopher, writer, and journalist.

Adam Gopnick wrote in an article in the New Yorker a decade ago, Facing History – Why we love Camus, that a person who met him on his one trip to New York, in 1946, when asked what he was like, said, “All I can tell you is that Camus was the most attractive man I have ever met.”

The man himself wrote from New York to his French publisher, “I can get a film contract whenever I want,” joking a little, but only a little.

Looks matter. Think Instagram.

Gopnick reminds us that Camus never asked the Anglo-American liberal question: How can we make the world a little bit better tomorrow? He asked the grander French one: Why not kill yourself tonight?

We are all Sisyphus, he said in his 1942 essay, the Myth of Sisyphus, condemned to roll our boulder uphill and then watch it roll back down for eternity, or at least until we die. Learning to roll the boulder while keeping at least a half smile on your face—“One must imagine Sisyphus happy” is his most emphatic aphorism—is the only way to act decently while accepting that acts are always essentially absurd.

He describes the absurd condition that we build our life on as our hope for tomorrow, while, at the same time, tomorrow always brings us closer to death. For Camus, the absurd arises when the human need to understand meets the unreasonableness of the world.

Camus believes that the absurd can never be permanently accepted, nor resolved, it requires constant confrontation, constant revolt. The contradiction must be lived; reason and its limits must be acknowledged, without false hope. The absurd does not require suicide. It requires revolt.

All this echoes in my mind. There is a lot I recognise.

While there are certainly differences, for me Camus’ thoughts connect, to an extent, with those of Edith Eger and Viktor Frankl. It’s the idea that we cannot change the world, nor those who are sharing it with us.

Nonetheless, we have to keep pushing the boulder up that hill. With a smile on our faces. There is no choice and no way out.


Today, Pádraig and his wider family had lunch in the Constitution Room of the Shelbourne Hotel. No better place to remember his grandaunt who had died during COVID without her family being able to say goodbye. She was a great believer in Irish independence and freedom. And the Shelbourne played an important role on that journey. She would have been in her element today.

We had lunch in the room where exactly 100 years ago, between January and March 1922, Irish Patriots drafted the country’s constitution which later became a model for other states declaring their independence from the United Kingdom, including countries as far away as India. The table, the chairs, the room itself were renovated but never changed substantially. Some chairs, like the one used by Michael Collins, were left untouched. A facsimile of the Constitution is on display. – In other countries, this room be a museum.

It was the first time in many years we all met. A really enjoyable afternoon, with many stories to catch up on. A fitting day to remember Pádraig’s grandaunt.


I want to mention a few things that became clearer to me in the past week in relation to the progress Pádraig has been making over the past months and years.

He is now able to reliably press a switch not just with his left foot or the fingers of his left hand, but also with his left knee. Using a three-button mouse, three fingers of his left hand can click the mouse switches independently and reliably (though we haven’t found an app that he could control with these switches). He should be able to use two or three switches at the same time now – a challenge for the near future. When we were helping him recently with eating some pretzels, he stuck a finger into one, lifted his hand up to his mouth, took the pretzel off his finger and ate it. No help required. At mass, he opens his hand, receives holy communion, and brings his hand up to his mouth. When he washes his hands, he picks up the soap floating in a bowl and squeezes the soap to wash his hands. He opens up a belt around his chest when he is ready to get out of his wheelchair. When I sit him up to prepare for the transfer from bed to wheelchair, he now nearly pulls his body up himself. He also pushes his body up from the floor during transfer to assist. He has travelled around Europe and the US. Most days, he ‘cycles’ around 5k using the MotoMed (no motor). He ‘walks’ around 1.3k using the Lokomat. He understands four languages, can read and respond to pretty complex quiz questions using a switch, he spells words using morse code, and keeps himself and us entertained with his tongue in cheek sense of humour. He is the best informed member of our household in relation to current affairs.

It all happened over a period of time. But when I look at it all together, take stock, and compare this with his condition from where he started following his accident, what he has achieved is truly phenomenal.

And above all, he is ok with his life. He smiles. He likes a cup of tea, rather than coffee.


Here are two more of Camus’ quotes.

“In the end one needs more courage to live than to kill himself” and “The only way to deal with an unfree world is to become so absolutely free that your very existence is an act of rebellion.” 

Let’s be courageous. Let’s be free. Let’s rebel.

Let’s smile.

And let’s have a cup of coffee, tea, or whatever you’re having.

Olympia

He who is not courageous enough to take risks will accomplish nothing in life.

Muhammad Ali, Olympic light heavyweight champion, Rome 1960

It’s a different Mohammed in the picture, Arif Mohammed Khan. And he is not from the USA but from Kashmir, administered by India.

He was the only participant from his country taking part in the Winter Olympic Games that just finished, representing 1.4 billion people. Because his father ran a ski shop in Kashmir. Check it out.

His first run was last Sunday in the men’s giant slalom event. He finished in one minute 22 seconds, 19.42 seconds behind the winner, Switzerland’s Odermatt.

You don’t have to be the best but you have to keep trying.

Yesterday, we had a meeting of the An Saol Family Support and Advocay Group in the An Saol Café, now in the An Saol Foundation Centre in Santry. Guest Speaker was Áine Flynn, Director of the Decision Support Service, DSS, that supports the implementation of the “new” Assisted Decision Making (Capacity) Act 2015, abolishing the Ward of Court system based on the Victorian (!) Lunacy Regulation (Ireland) Act 1871. Yes: 1871. You can listen back to Áine’s presentation and the following Q&A session here. Access Passcode: Ansaol!01

Áine gave us a very good overview of the Act and responded really well to the questions some of the 20 session participants had, in person or online.

I have the impression, though, that this now seven year-old act (!) that has to be amended (!) before it’ll be commenced in June of this year, is a bit like Arif. Only that Arif has already made it over the finishing line while the act still has a bit to go before we’ll be able to say the same about it. And as all Winter Olympians know: there is always the risk of falling or being disqualified.

Pádraig had a good week in An Saol. He started to use his Pforzheim-made arm splint again to stretch his left arm, surprisingly with relatively little effort.

Stretching works if you do it on a regular basis.

The ancient Olympics were held during a religious festival honouring Zeus. Today they honour those who keep trying, those who never give up, those who are courageous enough to take risks. Because if they didn’t they would accomplish nothing in life.

Blue Da ba dee da ba di

And everything he sees is just blue

Eiffel 65

Everything was blue in the Blue Lagoon. I had heard about it but didn’t have a clue what it was like to “experience the radiant powers of geothermal seawater. An otherworldly wonder.”

All this just a couple of hours after we had arrived in Keflavik Airport. An airport Pádraig visited on his way from Cape Cod to Dublin in his private air ambulance Learjet almost nine years ago. He doesn’t remember it as we do. We were not sure at the time whether he would arrive home ok.

This time, he is not with us. But he and his sisters last Christmas gave us a very generous present: a 5-day visit to Island. Flights, lagoons, 3-day expedition, hotel, dinners – all included.

We have been here a few days and still have some days left. This must the closest thing to Alaska Europe has to offer. Probably on a slightly smaller scale. But breathtaking.

And I have to think nonstop of Pádraig’s (and my) dream trip.

We relaxed in hot springs, stood in the freezing cold waiting for the Northern Lights, we walked between the tectonic plates, couldn’t believe how high the water shot out of the geysers and how bad it smelled, we climbed up a glacier in gear that would have brought us up Mt. Everest, walked on a black beech covered in white snow, saw what feels like dozens of the (mostly frozen) ten thousand waterfalls in the country, and just drove by Iceland’s largest glacier with a volcano underneath, the one nobody wants to erupt.

We have been travelling with a small group of nineteen tourists in a bus driven by an ex-school principle who now works as a photographer when he is not driving the bus. Most of our co-travellers are Asian. When we were admiring the scenario, they opened up our eyes to social media. Seeing them ‘capturing’ the scenery and themselves for their sites is nearly as interesting as the countryside and really ads to the excitement. Different worlds.

Today, one young lady, who must have thousands of followers on Instagram, asked us whether we would like her to take a picture of us. She took two dozen. At least. To us, they all look the same. To the trained eye, I am sure there are vast differences.

Last night we received a text from the Police telling us that we were close to Hekla. A volcano about to erupt. First we thought it was a fake. When we showed it to our guide this morning he said it was kosher and came from the police. But not to worry. We should only take those texts seriously that told us to get the hell out of wherever we were.

Pádraig and his sisters send us on a trip we won’t ever forget. Time for us in a different world. I am writing this driving through a snowstorm. Never mind the volcanos.

We finished today as we started our Iceland adventure. Blue. At a lagoon.

We didn’t get into it though. It wasn’t nice and warm but filled with 600 year old blue ice. Still an otherworldly wonder.

Da ba dee da ba di.

Cheerful

I would like an abundance of peace. I would like full vessels of charity. I would like rich treasures of mercy. I would like cheerfulness to preside over all.

St. Brigid of Kildare (451 – 523)

If you make it to the top to the Half Dome at the eastern end of Yosemite Valley in the Yosemite National Park, California, you have every reason to be cheerful. Not many people make it there and it must truly be one of the natural wonders of the world. A day to remember for the rest of your life. Especially, if you made it up there in the company of good friends.

I had reason to be cheerful last week because I ‘run’ the first race in the past two years.

Before you ask: I wasn’t interested in the finishing time, I just wanted to be back in the company of great people and finish those 5 miles or 8 kilometres. I did, got a medal, and even had a bit of a family support crew. It made my week.

There was another session that really made me cheerful and happy.

Pádraig continued his Morse-Practice spelling letters and words – like Ro-taaaaa-tion, or *-*, for “R”.

This time, there was a would-be therapy dog observing the action, trying to figure out the connection between Pádraig’s foot movement that lifted up his knee and created that sound.

What a wonderful world.

Last week was the first day of February, St. Brigid’s Day – the day when people all over the country get their blessed Brigid’s Cross made of rushes and hang it over the door to protect their houses from evil and fire.

Just to provide you with a bit of help in case you encountered one of those days when cheerfulness didn’t preside over abundance of peace, full vessels of charity, and rich treasures of mercy.

Congratulations

We live in the best of all possible worlds

Gottfried Wilhelm Leibniz

Leibniz was smart. But was he right?

Last week marked the anniversary of the liberation of Auschwitz by the Red Army. Holocaust-survivors spoke in the German parliament and after 77 year were still so moved they could not contain their emotions. The horror they had experienced never left them and the memories are just too terrible.

Today is the 50th anniversary of Bloody Sunday, when British soldiers shot 31 unarmed civilians who had gathered for a civil rights march through the Derry’s Bogside to protest against discrimination against Catholics in housing and employment. Troops from the Parachute Regiment fired more than 100 times, killing 13 people. After two inquiries and an apology from a British prime minister, no one has been prosecuted.

Is that the best of all possible worlds?

There are reasons to think that the world is a pretty difficult and challenging place for Pádraig too. Being hit by a car, with no-one ever been prosecuted, having to fight not just for your life right after the accident, but also for the right to live your life with the injuries you sustained, is tough.

It makes me think that the world could be better if we just tried a little bit harder.

But I also started to think that the world is quite an ok place, maybe even the best we can possibly get.

Sometimes, taking a deep breath helps.

Pádraig still goes to Hyperbaric twice a week. He says it helps him with his lungs and his alertness. I spend the hour with him, hoping against hope that there is some truth in what they say, that oxygen helps you stay younger.

As the weather is getting slightly better and the days slightly longer, Pádraig is also back out on more frequent walks. Yesterday, in the Botanic Gardens.

There isn’t much we can do to change circumstances. There is nothing we can do to change the past. No matter how horrendous it was.

What we can do is seeing the good things and the good people around us, and being grateful for them.

Congratulations to the wonderful world we live in. Thank you to the generous, caring people who are all around us.

Leibniz might have been right after all.

2+2=4

Two things are infinite: the universe and human stupidity. But I’m not quite sure about the universe yet.

Albert Einstein

Albert Einstein has a few of these funny quotes where he positions himself as the smart guy and most of the rest of us as the stupid ones. In a funny twist of things, I’d say that most of us would actually rather see ourselves as being on Einstein’s side, the smart side. And most of the rest of the humans on the other side. Which by itself, you could say, might be proof of our stupidity.

All this came to my mind when I listened to a documentary about Angela Merkel during the week. She was born in Hamburg and lived there until her family moved to the ‘Russian Zone’. The driver of the van moving their furniture to their new home reportedly said that he only knew two types of people who moved from West to East Germany: Communists, and other idiots.

Somebody once asked Frau Merkel why she liked and studied science and maths. Her answer was that because she could be sure that, even in the Eastern part of Germany, 2 + 2 equalled 4 – at least when she had done the calculations.

We are living in an age, when it is often difficult to figure out what is right and what is wrong. What is fake and what is authentic. 2 + 2 does no longer necessarily equal 4. Independent of the political system we are living in. Independent of the level of intelligence of the people around us.

Could you see anybody coming up, in a credible way, with lines like:

And I would do anything for love,
I’d run right into hell and back
I would do anything for love,
I’ll never lie to you and that’s a fact.

Being smart or being stupid is no longer as important as it was in 1951 when that famous picture of Einstein was taken or when he made that remark.

We have all been let down by smart people we trusted who told us lies, who didn’t tell us the truth, including prime ministers, a pope, bankers, judges, and doctors. And many of us have been pulled out of sinking boats and towering infernos by ordinary people who would be considered ‘stupid’ by the smart, rich, famous and privileged.

Pádraig had a good week. He slept well almost every night. He is content in himself. He had loads of exercise and fun, including a ‘dog day’ in An Saol, with three dogs providing tons of action.

We have started to plan life without COVID restrictions hoping that they will come to an end, that soon people can meet up with each other again, go out with each other, and more actively share their life with their friends.

Pádraig can’t wait to get out again with friends. Stay in again with friends. Travel again with friends.

There are people who will help us making our dreams come true. We’d better believe it. As least as long as the stars are burning.

As long as the planets are turning,
As long as the stars are burning,
As long as your dreams are coming true,
You better believe it.

If we believe that, we are smarter than Einstein. It’s not human stupidity, it’s love that is as infinite as the universe. We are the people who’d do anything for love. (And we won’t do that.)

Cake

My policy on cake is pro having it and pro eating it.

Boris Johnson

In other words, have your cake and eat it.

The little girl on the right in the picture above was just told that she could not have the cake and eat it. It’s either or. A life lesson kids, generally, learn early in life, certainly before their 57th birthday. (You also cannot have a lockdown and wild booze parties. Or participate in an election and not accept the results.)

We celebrated a birthday in the family last week with Pádraig enjoying the celebrations, and the cake. Birth-day stories, in addition to the cake, are one constant with birthday celebrations, probably not just in our family. I have a set of them for these annual occasions. The joy, the fear, the relief of that day. Now many years ago. Everybody, generously, just takes a deep breath when I tell them, again. And again. Every year.

It’s all pretty predictable. A given.

Or is it? – Not really.

I am so grateful that we can all be together. That I can tell my stories. That everybody is in a generous mood. Having a good time. Eating the birthday cake. Blowing out the candles.

Last week was the week a young school teacher was killed while jogging in the afternoon along the canal in Tullamore. Vigils were held all over Ireland, in England, Australia and the USA to remember her, to show solidarity with the family, and to send out a strong message to the world: no more attacks, no more deaths, no more tolerance for a culture where this would be in any way acceptable.

Pádraig came across a place where one of these vigils were held, yesterday afternoon when he went for a walk. Many people say that Aishling’s murder is one of these watershed moments that will change our culture. Let’s hope it does.

Being together is not a given. Nor is being able to blow out the candles on a birthday cake. Not even being able to eat and enjoy the cake is a given.

I am pro being together and pro enjoying the cake. Pro being there for each other and pro having a good time. Pro finding a purpose in life.

And pro changing the culture of abuse, neglect, targeting, letting die, killing, and looking the other way.

It is us, you and me, who will have to change this culture. Nobody will do it for us.

Paella

Eating is not merely a material pleasure. Eating well gives a spectacular joy to life and contributes immensely to goodwill and happy companionship. It is of great importance to the morale.

Elsa Schiaparelli

It’s your turn, they said to me. Thirty eyes were looking at me in expectation and with excitement waiting for me to present my party piece. I had just learned what a party piece is and was still in awe at what my friends, sitting around in a circle in the deep Donegal Gaeltacht, had just presented. Poems, songs, a dance.

My mind went blank. I couldn’t think of my mother’s name, never mind a potential party piece.

My Gaeltacht friends were kind people. They were not going to let me sweat it out. Realising that I was in a bit of a pinch, they helped me out with the only German song they all knew because an RTÉ presenter had been playing it for a while every morning as his signature tune. Erika. It’s a catchy tune alright, tough it comes with a ‘health warning’ on youtube for a reason.

While I was really grateful for the generosity of my friends for giving me a dig out, I was also slightly embarrassed. For several reasons.

I now have a party piece. Though I haven’t had an opportunity to showcase it for a long time.

It’s not a song but the idea is the same. Getting together with family and, unfortunately these days with very few if any, friends. And contributing something.

Last week, we had a few things to remember. Eight years ago, Pádraig’s tracheostomy was removed before being discharged from hospital. We spent two weeks with him in hospital, where they had removed not just the tracheostomy but also all the monitors he had been attached to up to then. The doctors in his ‘main’ hospital had told us that even an attempt or trial removal would be too dangerous. That he could choke and die, in the worst case.

Last week, he shared the paella with us. My party piece.