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!

It’s sooo easy: when you are tired, sleep; when you are hungry, eat; when you are thirsty, drink. At least this is one of the most quoted wisdoms of a famous zen master.

So why do I start eating when I am tired? And before you ask: no, I don’t go to sleep when I am hungry. Is this just me? I don’t understand it!

It’s a perfect example of knowing what is the right thing to do but doing exactly the opposite.

The thing is that in the case of eating and sleeping it should really be easy, sooo easy. But it’s not, at least not for me. So what about the more complicated, not so easy, not so straight forward stuff? My common sense (the bit that is left) tells me every day that I should do one thing, but than I do another. Like I should be forgiving, generous, empathetic, listening, understanding, helpful, supportive – and I should be: outraged by injustice, corruption and inequality, and be outspoken, uncensored, un-integrated, not pressed into a bad consensus. And then life takes over and I develop blind spots. Isn’t it funny?

Tuesday is, whenever possible, swimming day. An afternoon for Pádraig to relax in the water. To do things, every week, he had not done before, “firsts”. Today’s first was that he held on to the side bar at the deep end of the pool and stood up as tall as he is. Ok, amazing but not really anything completely new… but: he did it almost completely by himself. Without any support from me. Except for helping Pádraig to keep his head balanced. He stood up in the water, holding on to the side bar, with me just supporting his head a little, but nothing more. Isn’t that so unbelievably brilliant?

Going to the pool is the right thing. Allowing us into the pool and helping Pádraig and in any way they can, is the right thing. Knowing that ‘knowing the right thing’ does not mean necessarily ‘doing the right thing’ makes the people helping Pádraig to get into the water my personal heroes. Because they not only know, they actually do the right thing.

Have you ever missed the boat? Or found that the train had left (without you)? We had a great laugh to today when we discovered that Irish people are more likely to have missed the boat, whereas the Germans would have had problems with the train (“Der Zug is abgefahren!”).

Apart from the ‘real thing’, these are, of course, also expressions indicating that a chance or an opportunity had passed and now is no longer available. And as Ireland is an island, ‘missing the boat’ was the thing you wanted to avoid, whereas the Germans were (and are) more into chasing their trains.

We also had great fun today when Pádraig started to do his physio again on the floor mat, for the first time since Christmas. He really enjoyed it! Feeling his body, starting to recover control over his body, using all sorts of muscles he’d never use in the bed or when standing or when in his wheelchair. It must be an unbelievable journey of recovery for him.

Conscious that me body is not getting younger, I re-joined a yoga class I had been to before Christmas. The comment of a young person who joined me (and who went to the class for the first time) was: “I’m turning more often in my bed during the night than I did during the 1 1/2 of this class”. Veeerrry funny! I think they were having me on….!

The fun conversation about the boats and the trains made me think. It’s better to catch them, whether it’s the boat or the train. Because some opportunities don’t arise twice. And when they’re gone, they’re gone.