Inside or Outside. For many, this is a very critical question. For example for the German social democrats, the SPD. They have decided to turn around 180o, all in the interest of the country, of course, and join the christian democrats, the CDU, in government in a ‘Big Coalition’, a ‘Große Coalition’, or: Groko. Tens of thousands of Germans, mostly young Germans, have joined the SPD over the past weeks, so that they can vote against that agreement. So, whether this ‘Groko’ is actually going to happen or not, whether they will be inside or outside of government – who knows…

The days here have been fabulous: blue skies with almost no wind. But: it has been really really cold. The Irish met office would have issued a code ‘red’ warning. Dark red. Today we decided not to stay inside, but to go out, to face the arctic sun, and the elements. We walked all the way across the long wooden bridge towards the sea up to the Arche Noah. And, of course, back. To be honest, the ‘back’ bit was worse than expected because now the wind (and the wind had increased today) blew right into our faces. Pádraig was the lucky one, because he wore ‘Stollen’ a really good and caring friend had bought for him the other day. Don’t know what ‘Stollen’ are? Think of them as really long socks without the feet, to keep your legs warm. (And no, they haven’t got anything to do with Christmas.)

It was outside for us today. Followed by a warm-up in our favourite café overlooking the marsh and the huge sandbanks. Pádraig’s waffles were even better than the other day: they came with hot home made chocolate sauce and vanilla ice-cream. We decided to have a glass of white wine to remember this afternoon that was as close to perfect as an afternoon can get these days.

We were all really happy. Really.

(I promised myself to remember this afternoon, especially when times will be difficult again. And I’m sure that time will come. Happiness usually does not last. But neither does sadness. Both come and go. And even when you’re wondering what else on earth could go wrong next, because everything seems to go wrong, there will be happy, really happy moments. Like this afternoon was for us.)

It’s educational, at least, to watch TV in different countries. In Germany, one channel is searching for the country’s next super model. It’s basically about young women walking up and down in front of some middle-aged men making comments about their suitability. The only excuse for such a programme I got think of was that they must have made it before the #metoo campaign started and women began to speak out.

I got my first birthday present today, from Pádraig’s OT who staid on with Pádraig after a session to give us a couple of hours to go out. When we came back Pádraig had done some amazing work like unscrewing the tops of some small bottles grabbing them with  his index finger and thumb. When we left, he waved ‘good-bye’ – with his right arm! Something he had never done before! It made it all an evening to remember, for many reasons – not last because of the the big heart of a very generous, enthusiastic, professional, down-to-earth and very well grounded person.

Earlier today, I had come across this article in the Scientific American reporting on how Facebook is moving full steam ahead on its “silent speech” program, according to neuroscientist Mark Chevillet, who leads the project.

Few people use voice assistants at work: “People don’t like to do it [speak aloud what they want to post] in front of other people,” Chevillet told a conference at the MIT Media Lab. But “what if you could type directly from your brain?” Early testing “tells us this is not science fiction,” he said. “There is signal in there [the brain] that you can harness.” Building 8, Facebook’s advanced-tech center where the thoughts-to-type project is housed, runs on two-year cycles; Chevillet joined in 2016 from Johns Hopkins, so 2018 could bring hints that the project is making progress toward turning thoughts into text at the hoped-for 100 words per minute, some 20 times faster than today’s brain-machine interfaces.

We have another couple of days and a night in Hamburg. Amazing how a week just passes by.

There are good days, and there are bad days. And then there are days I’m not sure about at all at all. We went to Hamburg today for Pádraig to see a doctor and for all sorts of different reasons that plan didn’t work out. We got there (on time!:) but it didn’t work out. So we drove all the way to Hamburg – for nothing.

On the other hand, we had an adventurous day and we checked out a few sites from days long passed. A trip down memory lane. Pádraig hadn’t seen some of the sites and has only faint memories of the Schön-Klinik. (Hands up who recognises any of the buildings above?)

We went into the ‘Hamburger Meile’, a ‘mall’ our American friends would say, a building a mile long, with tons of shops. Heated. We went to the food court. Pádraig had the choice between Turkish, Indian, Italian, general Asian, Kentucky Fried Chicken, or McDonalds. He picked McDonalds. And he wanted a Quarterpounder. Translated into German that was a ‘Hamburger Royal TS’, with chips (‘Pommes’:). That’s what he got and that’s what he ate.

Imagine that: go into a food court, pick your shop, get a burger and chips, and finish it all up. Sounds so simple, doesn’t it?

But it’s a huge step forward to a life that is more independent, self-determined, and integrated. Tiny steps, sure. But they’ll get him closer to where he wants to get.

So, at the end of the day… was it a good day or was it a bad day? To tell you the truth: I am tired, I am exhausted, and I have very little energy left. But, I suppose, all that energy spent today was well worth spending.

Today was a ‘slow day’. Although it didn’t start like it. Pádraig had a therapy session in the morning, so we had to get ready relatively early (relative to our otherwise lazy mornings).

You know that feeling when you see someone who knows what they are doing really really well, doing that with all their heart and mind, with an incredible energy, enthusiasm and kindness? These are rare moments. And when you encounter them, they are really really special.

That board on the picture above is ‘home made’. The red and black ‘sticks’ are empty containers of medicine used to vaccinate cows on farms (if I understood everything correctly). It’s ingenious.

Pádraig enjoyed that session and the change from his ‘normal’ routine.

There are times when I’m desperate for routine. I dream of it and wonder, why on earth our life, my life, cannot be planned, predicted, or shaped in a more ‘ordinary’ or ‘routine’ kind of way. – Today was one of these days when I was really happy that we were not stuck to a routine.

He had it all himself: fresh hot waffles, accompanied by really special vanilla ice-cream and hot cherries, and topped by a dollop of cream! I shouldn’t admit to it, but I really hoped he might not quite finish it so that I could experience the explosion of tastes this food must produce in your mouth when you eat it. I could hardly control myself just looking at it.

It wasn’t my lucky day though. He finished each and every bit of it. Each and every bit. Not too long ago, we would have thrown that stuff into a mixer so that Pádraig could it eat. The thing is: this kind of food, any food, does not just tickle your taste buds in your mouth – it also looks incredibly attractive and smells just gorgeous. But: imagine what the plate would have looked like, if that food would have been mixed together and put back on that plate. My own guess is: pretty disgusting.

We are trying out and do things here every day, we would not do at home (at least not at that frequency). We are going out for a walk in sub-zero temperatures (ok, they’re *short* walks, but: nonetheless); we are doing ‘Mittagessen’ and ‘Kaffeetrinken’ and ‘Abendessen’ out of the house – at a street food kiosk, a cosy restaurant overlooking a quaint little harbour, in a coffee shop beside the sea.

Beats any kind of therapy (sorryyyy:), beats hanging out in the house watching the news for the umteenth time (and they don’t get better by watching them all over again and again), even beats eating my brilliant and tasty home-made food day after day after day.

It is really exhausting. But it is fabulous.

How on earth did this happen? – Check out that picture. Have a close look at it. Pádraig’s left foot is on the footrest (well, kind of…). However, his right foot is on the ground and the footplate on which his foot is supposed to be resting is tilted up. Now, none of us did this. We were going in and out of the room, giving him a drink, something to eat, getting ready to get his teeth washed when, all of a sudden, one of us noticed his foot on the ground with the footrest tilted up.

The only explanation we have is that he got tired of having his feet on these footrests, so he took his right foot up and left it on the ground. He must then have lifted his foot up and pushed the footrest out of the way.

Which is what any of us would have done – but Pádraig never ever had done anything like it, never mind out of his own initiative.

This being Sunday, we had a lie in in the morning. Pádraig just got up in time for a very dear visitor who helped him with some exercises, he had something to eat and then went out with us (the snow had just stopped:) towards the seafront. We went into a restaurant and had “Kaffeetrinken”, no coffee for the man himself, but freshly made waffles with ice-cream, cream, and hot cherries – which he finished all!

Tonight, the foot on the ground and the footplate lifted up in the air remain a mystery. But, honestly, how brilliant can it get!?

The best of a good day yesterday: Ticketmaster rang us back. TICKETMASTER RANG US BACK!!! Have you ever heard such a thing? You ring Ticketmaster to get a wheelchair ticket with company for a concert on one of the two extra days announced, on 9am sharp because that is when the sale opens. After a 10 minute wait they tell you that all the wheelchair tickets have gone, unfortunately, to people who had some mysterious code. You bring the bad news to Pádraig. A few minutes later the house phone – I mean: the HOUSE PHONE. Doe ANYBODY still ring your landline???? – the house phone rings. It’s Ticketmaster. And they got two tickets, one for a wheelchair and one for a companion, NOT for one of the additional dates, but for one of the ORIGINAL dates!!!! Which is when the scene changed radically. Of course, I was going with Pádraig. But then his sister assumed straight away that she was going. One of his PAs decided that if Pádraig needed help, she’d be available. Who is your best friend, Pádraig????

Then the journey to the airport, the journey on the plane. Never since his accident everything worked out so smoothly. The flight was, almost, a pleasure. How much better have we got, how much better has Pádraig got to manage the transfers, the sitting in a narrow seat, to stick it out for two hours on the plane.

German ‘efficiency’ stopped us in the tracks for nearly an hour, when the loaders in Hamburg decided to bring the wheelchair to the luggage area – never mind the big yellow sticker on the chair telling them to bring it to the plane where we were waiting to disembark, and hundreds of passengers were waiting to embark. For the first time, apparently, the Aer Lingus flight from Hamburg to Dublin was late. What was really admirable was the kindness, the patience and the professionalism of the crew!

Once we had found our luggage – it had been taken away after an hour circling around the luggage carousel – we were on to the S-Bahn, and from the S-Bahn to the Avis bureau in Hamburg’s Central Station.

You should have seen Pádraig in that station. He was soooo happy! He loved the buzz, the hassle, the people, many not taking trains at all but passing the night in the ‘Wandelhallen’. We passed through that station so often when Pádraig was in hospital in Hamburg. And now, he was so alert, so amazed at what was going on there, life!

Then into a Ford Tourneo for wheelchairs, slightly to small, but we managed to make Pádraig and the wheelchair fit. Quick stopover at a supermarket, like in the old days, on a weekend night on the way to the North Sea.

I was walking on clouds. How brilliant all this was is impossible to describe. And how much Pádraig enjoyed this incredible adventure of a journey that was utterly exhausting.

We tried to get the heating going in the house, tried to get the blankets out, tried to stay warm.

Today, we had a lie-in, we slept it out, took a lazy breakfast and went out food shopping.

We are still exhausted but in a happy way. What we did yesterday, what Pádraig did, was extraordinary.

He truly deserves the ticket to the U2 concert in November. And although I’d love to go with him, I think he might have a better night in the company of a younger family member…

After an epic journey by plane, s-bahn, and car, Pádraig arrived back in Tating.

The best part of today was to see how much Pádraig enjoyed seeing different people, places, and the trip itself!

Too tired to write more tonight , but we’ll be here for the week:)

There’s nothing you can’t do, with a ‘New York state of mind‘. I got a pocketful of dreams. There’s nothing you can’t do.

There are some really magical, outstanding pictures of last night’s Moon spectacle on the NYT’s website. The one above is one of them. What a sight!

We are going away tomorrow for a few days, for a change of air, some meetings and appointments, and a few days of chilling out. A bit of adventure.

Tonight, when Pádraig’s friends were here for their Thursday evening get together, we decided to organise a meeting between them and Pádraig’s SLT, and to check out a regular programme of going out, watching movies on the big screen and get to some concerts. Therapy is good. And so is living the life that is pulsating in New York, Hamburg, and Dublin. Right?1

“The young man knows the rules, but the old man knows the exceptions“, Oliver Wendell Holmes is supposed to have said once. (Don’t worry, I had to look him up as well:) So, the orange person ‘dancing out of line’ (or: aus der Reihe tanzen) is the old one, the grey people are the young ones.

What at first sounds really convincing, especially if you are working in the army or if you are a marriage counsellor – makes you wonder on second thoughts, especially if you are in any other profession or, as the case may be, if you are not happy with the status quo. I have found that it is the ‘old’ ones, the ones who are firmly part of the establishment, who have stopped questioning, who accept the way things are, and who have lost all enthusiasm.

I had a conversation today with someone who is very familiar with how a group of people developed something similar to what we are trying to build with An Saol, in another country. He said that that group was a “verschworene Gemeinschaft“, a really close-knit “sworn” community. They collectively ‘danced out of line’ did not accept the status quo and, together, managed to radically change how persons with severe acquired brain injury were treated.

We need to build that community and start dancing. Absolutely and completely out of line!

Pádraig had such a busy day today: exercises in the morning, a brilliantly relaxing massage, speech and language therapy, and music therapy in the afternoon. He started to spell words again as we were trying to find the best way to help him select the letters using a hand-operated bleeper. It’s so incredible: I truly believe that the biggest barrier for him to communicate with us, to spell out words and sentences are we, not providing him with the right means. He knows what he wants to spell, he can spell, but we have still not found the right way for him to select the letters in a way that is consistent, works in a functional/mechanical way, and doesn’t take an incredibly long time. It must be so frustrating for him.

What was the best part of today? – I went running in a snow shower this morning, got something like a cold-burn on my chest, and somehow got pinched so that I was bleeding, without noticing a thing. It felt good. Wild. Pádraig smiled at me when I came back, feeling how I was radiating the cold. We both must have felt alive, really alive that moment!

PS: Watch out tonight for the incredibly rare combination, all the the same time, of a supermoon, a blue moon, and a total lunar eclipse!