Read a great article today, from the New Yorker:

Even more serious is the growing acceptance of the don’t-rock-the-boat response to those artists who do rock it, the growing agreement that censorship can be justified when certain interest groups, or genders, or faiths declare themselves affronted by a piece of work. Great art, or, let’s just say, more modestly, original art is never created in the safe middle ground, but always at the edge. Originality is dangerous. It challenges, questions, overturns assumptions, unsettles moral codes, disrespects sacred cows or other such entities. It can be shocking, or ugly, or, to use the catch-all term so beloved of the tabloid press, controversial. And if we believe in liberty, if we want the air we breathe to remain plentiful and breathable, this is the art whose right to exist we must not only defend, but celebrate. Art is not entertainment. At its very best, it’s a revolution.

I find it difficult at times to stay balanced.

Driving down to the town I grew up in to celebrate a 60s Birthday with some of the people I grew up with. Staying up all night singing and cracking jokes and laughing senselessly. Moving in a different universe. Exposing my mind to different lives.

This is a specialised shop for disability and rehabilitation equipment. It’s in the North of Germany and it serves an area where it can take engineers, specialised advisors, sales and support personnel two to three hours to get to their clients. – A bit like Ireland. Only that in Ireland I have never come across a shop like this. Because it is not just a shop but it has an exhibition area and several highly specialised workshops. If you check out the pictures below, you will see what they do in these workshops: they sew, they build prosthesis, they build and adapt seating, they design and adapt support systems, they even have ‘simple’ parts such as hundreds of wheels to fit any kind of wheelchair. It would be brilliant to have such a place in Ireland.

 

When we were making plans to evacuate from Cape Cod and to fly Pádraig home, the doctors advised us that it would be safer for Pádraig to get a PEG, a direct entry into his stomach to which a tube could be connected in order to provide him with nutrition and hydration. They said it would be safer for the journey than a tube through the nose.

(Note: the pictures above are not of Pádraig but from the web.)

He had the PEG for 15 months. However, in 2015 we gradually introduced Pádraig to drink and food. Since the summer of 2015 he took his food only orally. Since the beginning of this year he took his liquids and drinks only orally.

And today, his PEG was taken out.

It will take a few days to close and heal up. There will be a mark on his stomach that he once had a PEG but it will become a distant memory.

This is a very major step. One that few expected him ever to take.

Two other really important things happened today. Someone in the family got a preliminary date for a final operation that will move things in the right direction. And I had an almost one hour-long conversation with the Archbishop of Dublin about injuries to the brain, about Pádraig, and about efforts to help persons with sABI to recover. It was one of the best conversations in my life. Ever.

It was pretty cold that day. In the morning I found out that one of my two friends who had come over from Germany didn’t have a white shirt to wear. As if there wasn’t anything else to do, I borrowed one from my father and brought it over to their B&B, together with a tie which he had not forgotten – he had just never worn one before. My sisters’ hats looked great – they and the rest of my family had been told that women wear hats on these special occasions. Which turned out not to be entirely true. The neighbour had taken a few days off to clean out his garage so that we could park my overloaded VW Beatle in it – the first time a car had been parked in that garage for years – as we were heading off to Spain for the year the next day.

Today must have been one of the warmest October days on record in Dublin. We sat out in the garden for a cup of coffee and a bit of carrot cake. After a meeting I had erroneously scheduled for today, we headed out to have dinner. Remembering that day 33 years ago. Remembering 33 years. Thinking: we very likely won’t be here in another 33 years. Settling for and toasting to the next ten.

I was so nervous back then that I never really enjoyed that day. Back then I didn’t think it was the ‘happiest day’ in my life.

Today, there is absolutely no doubt in my mind that it was not just one of the happiest days but also one of the luckiest day in my life. In many surprising and unforeseen ways.

When I look at the wedding pictures, those of us who are still alive are in the minority. Not just the older generation, but also my friend of the white shirt and tie, and my sister are no longer with us.

A reminder of how precious life is. And that it is up to us to live it to the full. And, even more importantly, that we need to help those who need our help most to live their life to the full.

I listened to Amazed today. I know, I know. It is terribly “schmalzig”.

I don’t know how you do what you do
I’m so in love with you
It just keeps getting better

There are days when it ‘just keeps getting better’ and there are days that are difficult. Today was a good day. For which I am truly grateful.

The video I like best from the many I took at the Ironman last Sunday is from the start at the beach. Everybody was so excited, the music being blasted across the beach was breathtakingly dramatic (and funny: “Sweet Caroline, good times’ve never been so good” when they were thrown back onto the beach), the first light of the new day was just coming out from above the horizon – a day that would see almost all of the competitors swimming, running and cycling for more than 12 hours without a break, without lunch and without a dinner. Some of them would take until after midnight to make it across the finishing line. Everybody there on the beach knew that this was going to be one of the toughest days in their life. A day they had been looking forward to for a long long time during endless hours of training. Do I need to go on?

And now watch this short video. This is how the race started.

 

The waves were crashing on to the beach. Many of the competitors who jumped into the waves landed flat on their belly on the sand when the water receded faster than they could manage to overcome the swell. And when they were just getting back up, the next wave took them and threw them onto their backs beyond the point where they had just tried to get into the water. Imagine this being the beginning of their big day of achieving the impossible. It was as if Poseidon was telling them not to bother even trying; he would gobble them up and spit them back out. Pure hybris.

But they kept trying. Again and again and again. Until they were finally out in the open water. 3.8km of really choppy waters ahead of them. And when the first swimmers got back and made their way through the waves back onto the beach, they started to run as soon as they managed to get back onto their feet, trying to get to their bicycles as fast as possible.

This was inspiring. They did not give up. Although they were facing the most difficult conditions right from the start.

Pádraig did not do an Ironman today, but he went back swimming. He go a present of a ‘dry robe’ that he can use to keep dry and warm when getting out of the water and into the car. With this robe, there is really no need for him to get changed on one of the wall-mounted stretchers in the changing room (if there is one of these stretchers) he can get from the car straight into the pool, and from the pool straight back into the car. It was a fantastic present.

It was also a fantastic day because today, for the very first time, when I helped Pádraig out of the bed after his nap, I gave him a hand to stand up. And as we were standing there, I helped him a little, but just a little, to move his legs. And very slowly, he took four steps forward. He had taken steps and walked in Pforzheim, of course, many times with the helped of two or three people. But never with just one person supporting him. It was like his own Ironman achievement! Challenging the gods. Pure hybris.

Back.

I tried of a way to say it. But I miserably failed.

Pádraig’s life has changed.

But. The change he brought to my life. The way he is shaping what I think. What I do. What is important to me. What I value.

All that has changed beyond recognition.

For the better.

It all looked so easy: the swim, the cycle and, at the end, the run, for good measure. Only that it wasn’t. Because all of these were over mammoth distances: 3.8k the swim, 180k the cycle and 42k the run. And she ran this marathon quite a bit faster than I ever did – and wasn’t even out of breadth when she was finished.

I’m exhausted from trying to keep up with her on the different race track today over 11h25ms. I’m just back home to dry up (it has been raining over the past couple of hours) and I know that there are still people out there running. And they will be for the next few hours.

I know it’s not “all in the mind”, at least not on just on race day. I know that what you need to do to finish a race like this, and in a super time, is focus. Over months. You really have to believe that you can do this and you have to work really hard to get there.

I am immensely proud. I am awe-struck. I am inspired. And I got a t-shirt!

(And I promised myself today that I will get back running. And that I will never ever give up.)

Just north of Barcelona, Calella is a town on the Mediterranean where years ago Pádraig and his sisters spent a week or two on a training camp our swimming club had organised. The hotel they staid in and the Olympic pool are just around the corner. I am sitting on a balcony of my room in one of these gigantic hotels in Capella, just arrived from Dublin. There are dozens of crickets downstairs in the garden, it’s warm and there is a soft breeze coming in from the sea.

It’s late and I’ll be getting up really early tomorrow morning to sea one of Pádraig’s sisters doing an Ironman. I think I’m probably more nervous than she is tonight. but I am already immensely proud of her. I know what it is like to run a marathon, but she’s going to swim nearly 4 km and cycle 180 km tomorrow before she’ll start running 42 km. It’ll be a long day for her.

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Thejournal.ie runs a page every week called: News Quiz: How well do you remember the week that was? Pádraig, over the last few weeks, has been doing this quiz and surprised us each time by getting more answers right than myself.

“Incredible”, I hear you say. “Incredible”, that’s what I thought.

Here is a sample of the quiz, from a week or two back, Check it out. How well would you have done?

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1. Which Irish political leader said that the Take Back The City housing activist group is something they ‘wouldn’t be associated with’.

• The Greens’ Eamon Ryan
• Labour’s Brendan Howlin x
• Sinn Féin’s Mary Lou McDonald
• Social Democrats’ Róisín Shortall

2. What did former UK Foreign Secretary Boris Johnson refer to the so-called Brexit backstop as?

• A load of shite
• A bad idea
• A monstrosity x
• An unworkable plan

3. What will Conor McGregor now be calling his own brand whiskey?

• Fighting Irish
• 188 Bottled
• Notoriously Smooth – that’s one he got wrong
• Proper No. 12

4. Peter Casey became the third Dragon’s Den star to get his name on the Presidential ballot, but who became the first person to drop out of the race?

• Gemma O’Doherty
• Kevin Sharkey x
• Bunty Twuntingdon-McFuff
• Sarah Louise Mulligan

5. What was the name of the storm that assaulted Ireland in midweek, killing two people and leaving half the country without power?

• Alan
• Alex
• Alistair
• Ali x

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Incredible? – Why? We just have to give him the chance to try!

What’s the point? Is there only one? Are there many? Are there small points making up a big one? How big can one point be and still make sense? How big can it be to influence, to allow you to make a real difference?

Or is it not the point at all that is important? Maybe it’s the person making the point that is much more important than the point? Like: big people making big points, small people making small points?

“I have a dream”, for Martin to say makes sense, “World peace”, for the beauty contest participant to say doesn’t.

When I went to school, just having missed the 60s, but feeling very much connected with that decade, we had a saying “when it doesn’t make sense, at least it makes non-sense”. And we thought that was terribly funny.

Seriously, trying to make sense of what is going on around us doesn’t make sense. But does accepting that it’s all a mystery and leave it like that, unquestioned?

It’s all going back to old Sokrates who knew that he didn’t know anything and thus became one of the wisest men in history. Only fools know the answer to everything.

Today we made quite bit of progress in setting up the company that will deliver Pádraig’s care, hopefully from next month. The paperwork for this is truly amazing, meaning: it’s a lot and it’s detailed. Also, amazingly, got a phone call from the Archbishop’s office to arrange a meeting for late next week to discuss the An Saol Project. Can’t wait for it.

Pádraig had a good day today. He is using the arm trainer more often now (like a MOTOMed for arms) and has managed to move and train for short periods without the support of the build-in motor supporting his arm movements. Given that not so long ago one of his HSE therapists had stopped him from using an arm trainer because “it could cause him injuries”, and even stopping us from purchasing one (John Hume would have asked: “On whose authority?”), Pádraig is doing extremely well!