IrishFerries

After a great night’s sleep we made it to Cherbourg, passing Omaha and Utah beaches as well as loads of cementaries where young men are buried according to their nationalities. One day, we must come back with more time to visit these places that shapes my parents’ lives. Every day living with this uncertainty – would they survive to see the next day. And this invasion, would it finish the war?


We’re on the Irish Ferries’ Oscar Wilde registered in Nassau – which is neither in Galway nor Mayo but on a much warmer Island far far away… Insurance must be cheaper there.

We’ll be arriving in Rosslare tomorrow morning, as Pádraig did almost two years ago. And how much things have changed! Unbelievable.

Not only will we be heading home instead to the National Rehabilitation Hospital, but we’ll soon be starting the An Saol pilot – something we only dreamt of just two short years ago!

And that will still only be the beginning!!!

Roadtrip

Organized as we are, we were looking for a place to stay tonight on the first day of our mega road trip from Tating to Dublin, about 16 hours drive, not counting the ferry, via Germany, the Netherland, Belgium and France. We found a room for 32 euro and rang ahead to make sure they had a wheelchair accessible room. The person on the other side of the line didn’t speak German, English or Spanish. Which is when my better half came to the rescue (as so many times before). She had studied French in school. I looked up the word for ‘wheelchair’ on Google Translate and together we managed to book the room. We thought.


Then I looked up the comments on the hotel and it had everything from unwanted ‘animals’ to staff ‘only’ speaking French!

When we arrived, after a long 9-hours drive, the hotel was closed and when I had  managed to book us a room (‘no reservation found’) with a credit card on a machine at the door, the room was too small to accommodate a wheelchair!

But then – a really friendly young woman appeared out of nowhere, showed us a wheelchair-friendly room, and cancelled the first one. All in French, of course. The room was nice and clean and the beds were great with white crisp sheets of linen.

Vive la France!

BigHeartDay

Our last day in Tating before the very long drive back to Dublin. We met builders who will do some adaptation work here so that Pádraig will be able to get into the bath and around the rooms a bit easier. If it all turns out as we hope it will, it’ll be really comfortable.

We also went out across the bridge to the Arche Noah. It’s 3 euro per adult or a receipt for the Kurtaxe, a type of spa tax you pay each day you stay in St Peter-Ording on holidays or rehab. But, it was relatively late in the day and the man at the crossing must have had a big-heart-day, he just waved us through. No Ausweis, no Bescheinigung, no nothing. In Germany! Wow!

 

Kiel

It had been worthwhile getting up in the middle of the night to make it for our 8:30 appointment in Kiel with an absolutely brilliant Occupational Therapist, or: Ergotherapeut as they are called in Germany, working for a Red Cross competency and training centre in the area of assistive technology.

We were introduced to some equipment we had never seen before: a really cool high-tech walker as well as a hand made brilliantly designed ‘jump suit’ for walking when suspended from the ceiling.

But the absolute highlight of the morning happened when Pádraig managed to do something he himself very likely wasn’t aware he is capable of and would most likely not have tried had it not been for the encouragement of this exceptional OT: he moved a mouse (disguised as a fire ball on the computer screen) not just down (that was easy) but also up, then left and finally right across the screen. – Truly sensational firsts!! Pádraig was so proud – and so were we!

Pádraig is not quite there yet, but imagine: if he manages to do this correctly, he will be able to drive his own wheelchair using a joy stick.

Talking about wheelchairs – the OT didn’t quite like Pádraig’s wheelchair which he felt was an off the peg ‘caring’ wheelchair whereas someone like Pádraig should have a customised outdoors wheelchair – as all the kids in his institution receive…

Oh – we got a loan of that joy stick and we will try to get not just the game Pádraig played there today, but also a tractor driving game with foot controls and a wheel.

What a day!

Wheelchair-Friendly

“Wheelchair Friendly” can have different meanings. The sticker we discovered on a car at today’s “Straßenfest” in St. Peter-Ording captured them all.

Before Pádraig enjoyed the Bratwurst and Crêpes at the local street festival, he had been to the dentist this morning to get the ‘all clear’ – which was really good news. It was great to see how well he collaborated with the dentist, and – that there are dentists who treat persons in their wheelchairs (gives “wheelchair friendly” a slightly different meaning).

Tomorrow morning, really early, we’ll all be driving to Kiel where the Red Cross has a special centre for assistive technology. We’re so curious to see what the man working in this field for the past few decades can do to help us to understand Pádraig better and help Pádraig to communicate better with us.

Ceiling

Following up on yesterday’s ‘swinging’ theme – here is a selection of swings and harnesses suspended from the ceiling of a couple of OT practices Pádraig and us visited. It all looks pretty simple but there are literally decades of experience in the constructs.

Some are more for fun, stimulation or relaxation (does that sound contradictory?), some are more for support and safety, for example when walking.

There were other things we discovered: for example, that you can build your own drum using a flower pot cover by a towel drenched in gelatine (which will get hard when it dries) and  secured with a simple string. Isn’t that ingenious? Although we didn’t check that I believe what we were told: if you take a flower pot with a hole in the bottom you can ‘blow’ out a candle by holding that hole close to it and beating the drum!

Something else I learned today is how closely connected our ability to ‘feel’ is to our ability to ‘move’. And how closely connected the feeling in our fingertips is to feelings and senses in our mouth.

In the end, everything seems to be connected!

Swinging

The Sultans of Swing in Garding, wait for my daddy-oh, knock knock knocking on heaven’s door – is it superstition?

Not a bad night out in Garding, Germany’s second smallest city, with an amazing line-up of 7-8 live acts every Tuesday night in July and August. If you ever make it here, be prepared for the most unpretentious, ordinary looking, down to earth crowd. None of the ‘glamour’ of St. Peter Ording Sylt-wannabes.

For Pádraig it meant a swinging night out in Garding, with a bit of Dithmarscher beer, washing down a ‘bratwurst’, followed by a crêpes with Nutella. Who would ever have thought?

Absolutely

Here are two videos of Pádraig. Both absolutely spectacular. Think back or read the first year of this blog as a reminder and compare.

Even last year, when we tried to walk with Pádraig in Pforzheim, he (or was it us?) needed four people to do what we did this year with just two of us: I supported Pádraig from the back, and a lead therapist helped him to move his feet forward.

 

Pádraig has been using his arm, hands and fingers purposefully before. But today, he found a different purpose. He checked out the controls for a remote control car his therapist here in Garding gave him (just the remote, not the car:).

As we watched him using the controls, we thought that there are wheelchairs, not just toy cars, that can be controlled by joy sticks.

This week, our last week in Tating, Pádraig has a full diary. Dentist in Meldorf, assistive technology in Kiel, ‘swinging seat’ specialist in Büsum, as well as two hours of occupational therapy.

We’ll also have a meeting with builders who will adapt the place while we are away to make it easier for Pádraig to move between the rooms and to use the bathroom.

While all of this is happening, we are in the process of starting a partnership with one of Germany’s biggest and oldest charities supporting sick, disabled and socially disadvantaged persons, bethel.de.

Exciting times! Absolutely!

CityTour

Truth be told, I was a bit distracted. We were talking just a bit too much to each other to be able to fully appreciate the commentary now being played back to us as we were driven on a guided hop-on-hop-off tour through the city of Dortmund, the city we all grew up in (if we ever did). Ten old class mates who had finished school 40 years ago and who met for the day to catch up with each others’ lives and to relive the past for a few hours.

Had we not looked out from our roofless double-decker bus at the city being described to us, we might have thought that the city we were ‘introduced’ to was a city as ‘beautiful’, ‘innovative’, ‘vibrant’, ‘full of history’, and ‘dynamic’ as Berlin, Munich or Hamburg. The story of Dortmund someone had prepared for the city tour was impressive: century-old history, kings and kaisers, the heart of the Ruhr-Valley and Germany’s industrial centre for decades, a few years of ‘confusion’ (“Wirren”) during  thirties and early forties followed by extremely successful economic re-structuring by the establishment of high-tech innovation parks and a world-leading service sector. The story wasn’t wrong, but it clearly didn’t match what we were seeing. However, someone clearly believed that this story truthfully represented the story of our city.

I’m writing this on my way back to Tating, on the train that is just passing through the city of Hamburg, crossing the Alster, passing by the hotels Merkel, Putin and Trump stayed in over the past couple of days, along the “Messe” where all the meetings took place, passing through Schanzenviertel Station that was closed off during the disturbances and protests with barbed wire.

Different people with different backgrounds and interests will tell you different stories about what happened in Hamburg over the past few days, why it happened, and what was achieved.

Why is the ‘truth’ so complicated? Is it not straight forward and simple?

I don’t think the truth is ‘straight forward’ and it’s not ‘simple’ even for ourselves, never mind when we want to share ‘it’ with others, never mind when it is being prepared for public consumption, like in the case of a simple city tour or a more complex G20 meeting.

Not being an expert in psychology (or anything else for that matter), but reflecting on my own experience, especially over the past few years, I think the ‘truth’ is so complex that I wouldn’t be able to deal with it in all its complexity. It has to do with self-protection and self-preservation, an instinct to survive. It’s an attempt to stay healthy (physically and mentally) and to survive by focusing on those aspects of the truth and the reality around me and inside myself that allow me to be at least ok, and happy at times.

Writing here is part of my life, a daily routine. It’s part of what I am doing to survive. It’s about aspects of what is going on inside and around me. It’s about how Pádraig is getting better, about his incredible determination, his smiles and his humour. What I write here is not the ‘full story’, it can’t be. It’s not ‘complete’, it doesn’t represent the ‘full truth’, but it is truthful. I want to write a more complete story one day but it will require a different approach.

List

Pádraig’s therapist near Tating suggested to list all the things he is able to do. It’s such an obvious suggestion and, like many obvious thoughts this one never really occurred to me.

Maybe it’s because we know what he can do. But then, most of the therapist (and really most of the people) seeing Pádraig don’t. They know part of what he can do, usually the part they are working on with him: physios know physio things, speech and language therapists know about SLT stuff he can do, and so on. It would also help us and himself to see how he has been improving over time.

I’m in Dortmund to meet old friends. Part of the reason is that 40 years ago we got our Abitur, our leaving certificate, Some of us haven’t met for many decades, with some I meet every few years. They are strange those meetings because on one hand, so many things have happened to each of us, On the other hand, some of us have such strong common memories that we can just continue were we left the last time we met. Be it as it will,