Dutchman

It’s a tongue twister I never got right: “The Dutchman’s not the kind of man who keeps his thumb jammed in the dam that holds his dreams in“. To me it’s one of the most beautiful lines in one of the most beautiful folk and love songs. I had to think about that when I went out for my first long run today, in preparation for the Hamburg marathon. I went up the road, to the the first and then the second dike, across and down to the marshland with the Westerhever lighthouse in the distance. It was a dark, really cold morning, with nobody out for a walk, except for me ‘running’ along the dike. I was thinking about the Dutchman and my ice-cold thumb not being jammed in the dam, allowing my dreams to flood the marshes. There they were. All around me.

Against all odds, I made it back home. It took my body about an hour to defrost, turning into all shades of red and pink in places. But you know what? I felt great. So much so that I thought: being able to do this every day (or… every second day:) and being with the people I love is all I really need. – I know, I know. It’s not. But that is how it felt.

Today, we didn’t make it to a cake shop or to a nice café or restaurant. No waffles for Pádraig. Instead, we went to one of those incredibly big electronic shops they have in Germany where you feel you absolutely need to upgrade your phone, get this super-fast 128GB USB stick for your laptop, and change your boring white fridge for a fancy-looking NY-style fridge and freezer and ice-maker. It was hard to resist. In the end we bought Pádraig high-tech, highly-reduced headphones we had tried out with him while exploring the shop, listening to Bell X1 and Snowpatrol.

While I was humming the chorus of the Dutchman –

Let us go to the banks of the ocean
Where the walls rise above the Zuider Zee.
Long ago, I used to be a young man
And dear Margaret remembers that for me.

Outside

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.)

Technology

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.

Hamburg(er)

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.

HomeMade

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.

Beats

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.

Mystery

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!?

YouToo

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…

Epic

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:)

Outstanding

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