What a day!

You think it couldn’t get better and then it does!

This was dreamboating all over again. There was I doubting that this would work. So many things could go wrong, I really had serious doubts about whether we would make it for 5am to catch the train at 5h53 in Diepholz. And that was just the beginning.

Of course, everything worked out like a dream.

We went on Pádraig’s first ever long drive, getting up long before the crack’o dawn and made it with gazillions of bags to that platform in the middle of nowhere in the middle of the night.

Incredible veterans of bringing sick people to Lourdes got everybody onto the train and set us all up. As we made our way south, we stopped almost everywhere a train could stop to pick up more people.

There are now over 400 people on this train with 47 seriously ill people. There are carers, nurses, doctors, priests who could not do enough to help you. They are all volunteers, taking a week off to help other people getting onto this train and make their way to Lourdes – in 28 hours.

It is truly amazing.

Another truly amazing thing is that last night I got a call from TheJournal.ie who ran an update story on Pádraig this morning getting tens of thousands of hits in just a few hours. This morning that was followed up by a call from the Irish Independent. At around noon Joe Duffy’s programme on RTÉ One, one if not the most listened to radio programmes in Ireland, called and asked would I talk to Joe.

So they called me as I was travelling with Pádraig and the rest of the gang through the south of Germany heading for Lourdes. We had a chat and I told Joe that Pádraig listens to RTÉ and, at times to his show.

Then Joe did something I had not heard him doing before on his programme: He talked to Pádraig who he had never met before (I believe), directly, live, over the airways, telling him how much people are supporting him in his struggle to get better, that there wasn’t a day Pádraig wasn’t mentioned to him in a conversation by one of his friends, and that I wished that for Pádraig this long journey, not just to Lourdes, but beyond was one in which he would reach his destination, that he would get there well and safely.

This train has not internet. I will try to post this blog, but will send on the links to the programmes mentioned tomorrow – hoping our hotel in Lourdes will have wifi.

Thanks to a great friend in Germany who posted a comment last night about another strike of train drivers in Germany, I found out from bahn.de this morning that the train I was going to get from Frankfurt Airport back to Hamburg tonight had been cancelled. When I checked I found out that there were no more rental cars available at the airport. So I had to book another flight going directly to Hamburg (which I hadn’t done to save money) and cut my stay in Ireland (and work) short by a few hours. Looking on the bright site, it’ll give me a few hours of sleep tonight before getting up at about 2am to get ready for the drive to Diepholz.

Not to worry if you haven’t heard of Diepholz. Neither had I. In fact, I’m a tiny bit nervous about going to the ‘right’ Diepholz. Google Maps tells me that there is only one, but I find that hard to believe. We’ll just have to chance it.

The Diepholz we’ll be driving to is about 2 hours south of Hamburg (most places in Germany are South of Hamburg, except, maybe, Tating) and we’re going there because it’s from Diepholz Hauptbahnhof that our special train will depart at 5:53 tomorrow morning, and we were advised to be there about an hour before that, i.e. at 4:53 – approximately.

We’ll be arriving in Lourdes on Friday morning at 10:22 – I am still at awe at the ability of the train companies to calculate these times to the minute. Unless, of course, the driver of that train from Diepholz has decided to go on strike in the meantime too – to be honest, I hadn’t thought about that possibility until right now…

For years, we walked parts of the camino around Easter, a few days at a time. Instead of a long walk, we’ll be going on a long train journey to a place I remember as being very special. For Pádraig and for us, this will be the first long, not-hospital-related journey for almost two years. We’ll be back in Hamburg the night before his birthday, which we will celebrate in style and, again for the first time in almost two years, outside of a hospital.

Think about this – it sounds like we’re about to join life again. Not fire-fighting, not worrying constantly.

Tonight’s post will be short just a quick note. In Hamburg, the preparations for the big trip are getting more intense. I am in Limerick getting ready for bed after a long day of driving and working and sorting things out.

Pádraig went for another long walk which is great for him for so many different reasons, from breathing to sensing.

Must go. Good night.

Twitter went mad today with gazillions of tweets about that brilliant video and song, that went viral today on youtube and www.amhrandophadraig.com: Pádraig, by the unmistakable Marcus Mac Conghail & IMLÉ. It’s based on the poem by Ciara but took a bit of a life on its own (just watch that marathon:). I love those hearts appearing out of nowhere and being painted in the sky by specially commissioned aeroplanes. It’s like ‘love comes to town’, only better.

It’s evening and, instead of watching the news, I’m sitting on a plane from Frankfurt back to Dublin, at 30,000ft, watching the clouds in the evening sun below me. This is one of those mad trips that, soon, I won’t be doing anymore. Last night I slept in Rot (near Heidelberg), tonight it’ll be Dublin, tomorrow Limerick, on the train the night after and then driving to catch another train, on the train on Thursday night again, and Lourdes (yes, Lourdes) from Friday night.

Being away from Pádraig from yesterday lunch time has been very strange. To see what’s going on in the rest of the world is almost as strange. Talking to people about all these things that have been so important to my (professional) life for decades is almost surreal. Some things I’ve been working on for a long time, are just now really taking off. At a time, when life has been changing as dramatically as it could.

Seeing Pádraig react to new things around him: music, the sound of birds, wind, sun, movement, driving, life – is incredible. Feeling the love that no words can describe, and I never knew existed as strong as it is does, the energy this love generates in so many people around the globe, all these mad things people are doing because they want to express their solidarity, because they are getting inspired by his fight for life, heart painted in the sky, poetry and song – is giving so many people a taste of what it means to be human, humane. It reduces all it touches to the essence of what life is, means and exposes the ‘noise’ that surrounds us to what is is: noise.

A few times I have tried to change the world, the people, trying to explain to them what is the right thing and what is the wrong thing to do. Looking back, I don’t think anybody really noticed. Ever. What happened to Pádraig has changed me. And it has had a bigger impact on more people, it has brought out the best in people in a way that is magic. So magic that it has already changed the world, in a small but significant and very real way for many.

First of all: thank you all so much for your great music suggestions!!! If you can think of any more new songs Pádraig might have missed out on in the past year or so, please let me know!!

At lunch time I learned what “SEV” stands for on a German train time table. I had been wondering why the train times had changed when I looked them up on the web. Maybe they were different on Sundays? When I got to Tonndorf Train Station and checked the time table there, there were no changes. And there was no train at the “changed” time.

There just was no train.

Because, yes, you guessed it, “SEV” stands for Schienenersatzverkehr, in other words: busses were running instead of trains from Tonndorf today.

Pity that by the time I had figured that out, the “SEV” I was supposed to get had left.

I could go on with this story for a while – but, eventually I made it to Hamburg main station, just in time to catch my train to the South of Germany , where I am tonight, getting ready for a days work in a company, then to Dublin in the night, and an early morning start to drive to Limerick. – I’ll tell you about the rest of the week at it’ll progress. It’ll be hectic.

Of course, Pádraig was at his best today. Long hours in the wheelchair, long walk out, great phone call with his uncle in America, exercises, great eating and drinking, standing bed, head control – the list goes on. Pat said he was really happy because he enjoyed doing all this stuff. Living. Life. Trying really hard. Getting tired. Breathing. Feeling the rain and the wind. Smelling the grass, the trees, the flowers.

I’m going on down to Yasgur’s farm
I’m going to join in a rock ‘n’ roll band
I’m going to camp out on the land
I’m going to try an’ get my soul free
We are stardust
We are golden
And we’ve got to get ourselves
Back to the garden

This must be the best version of Woodstock with Joni Mitchell telling how she didn’t make it to this festival having been with this new band called Crosby, Stills, Nash and Young the previous night and then watching Woodstock all day on the telly…

Today’s German Music Tip
Heino, Willenlos – Heino in Hamburg, sings Marius Müller Westernhagen, an absolute deadly combination. I heard that on last Friday night on a jukebox (!) when I was out for the first time in months with a good old friend and we were wondering whether this was for real. It was. Was ist mit dir los?
What’s hot
The Garden
What’s cold
Car Parks
The German word/phrase/verse of the day
Was’n mit dia loos?

Escapism just got a whole new meaning. Saturday night on German TV cannot be beaten. Just now, there is a band playing, following hard on the footsteps of Chris de Burgh, which has had “außerfriesischen Erfolg”, Santiago – with “Lieder der Freiheit”, Songs of Freedom.

But, to a more serious question: when did yo last check amhrandophadraig.com?

Well, check it out. Tell you friends to check it out. Tell your mother, your father, your aunt, your uncle, your TD and local publican to check it out. On Monday.

There are rumours that a new song will be posted there, called, what else: Pádraig. On Monday.

We went on another practice run today. A spin on the autobahn. No doubt, it’s a bit tight there in the back, but it’s working. We’ ll have a 2-hour+  long drive on Thursday morning to catch the train to Lourdes on Thursday very early in the morning which is now looking good. No doubt, we’ll make it to catcht the train, not to Georgia, but to Lourdes, at 5h50 in the morning:)

Back in the apartment, Pádraig had his dinner. And for the first time, he held his head up high, all by himself, for quite a considerable time. It is so amazing to see him progress like that. Holding his head – something one of his therapists in the hospital didn’t think would happen.

Thank you to all who keep the music ideas for Pádraig’s play list coming. Keep thinking of music that came out recently that you think Pádraig would have liked and I will get him a CD or two, maybe three, to listen to, getting up-to-date with new music!

Last night I went out (yes, I did go out!) with an old friend. We decided to do a cycle charity ride: from Long Beach to Nappa Valley in or around April of next year.

Whatch this space.

 

Please: keep the music ideas coming! Music you think Pádraig would’ve liked and which was published over the past year or so.

You will remember that I talked about different gadgets that I thought could help Pádraig, and persons with similar injuries to his, help communicate.

One of them was the Emotiv EPOC headset. If you don’t remember, have a listen to Tan Le introducing it during a TED talk she gave five years ago, a talk that has been viewed 2.1m times.

Today, the headset arrived! – It looks really interesting but also a little bit tricky to use. Certainly lots to learn about this new and evolving technology. If it really worked, just imagine: a computer programme interpreting Pádraig’s thoughts and acting on them!

It’ll take some time to figure out how it works but it will happen!

I had to look this up: Kazakhstan. Never mind that it’s the most difficult country name to spell, short of Czechoslovakia, and that country doesn’t exist anymore. but where is it and why is it important to know?

“I’ve never seen an organisation as badly organised as the HSE.” chipped in healthcare consultant Martin Turner, which is something given that he has advised governments in Iraq and, wait,  Kazakhstan. The HSE was not a learning organisation and safety was not on its agenda, he said. (Irish Times, 9 May, 2005, page 5)

Martin Turner was brought in as one of the international experts to investigate the case of the “Midland Babies”, babies that died in Portlaoise hospital.

Mark Molloy, the father of one of the babies who died, said that he and his wife felt they had been “on a solo run” for two years and they had “worked within the system”. – “We thought we were telling people, at hospital level, local and national level, things they didn’t know, and it turns out they did and they stood by and allowed further unnecessary deaths. (Irish Times, 9 May, 2005, page 5)

Someone else (can’t remember who) also said that there was no reason not to believe that these scandals are restricted to Portlaoise or, indeed, to women’s or babies’ health.

Today is Ascension Day and, in Germany at least, “Vatertag”. Nobody remembered:(

Pádraig has started to play a game: picking up corks, lifting them up and ‘throwing’ them into a separate container. He needed a bit of help to hold his arm, but he can to it…

ll

Where are the songs Pádraig missed in the last year? Let me know. Put the titles in the comments… 🙂

Anyhow.

It always had to be Plan B.

Even when I didn’t know. When no-one knew. Then.

Because Plan A, that’s the one where we were going to continue doing what we had been doing. What I did when my father died – I was in Cincinnati, he had told me to go, not to worry, on the way back I was sitting on the plane to Dublin when they opened up the doors again and put me on a different plane, to Frankfurt, far enough to take too long. What I did when my sister died – this time I stayed with her until the Sunday before the Monday she died, nothing was going to be the same, life was going to be different, everything was going to change, and then I slowly slipped back as if nothing had happened.

Pádraig was ok today but I want to do more with him because he can. Fun stuff. To put a smile onto our faces. Not the struggle-kind-of-stuff. The ‘I think he’s tiered’ kinda stuff. Not the choking kinda stuff. The routine stuff. Oh, how tired I am of routine! And how much I yearn for it.

Nothing will ever be the same. Never was going to be. In any case.

Did you know that Joni Mitchell wrote ‘Both Sides Now’ when she was just 21?

And I get the urge for going
When the meadow grass is turning brown
And summertime is falling down.

Today’s German Music Tip
Udo Lindenberg, Ich bin der König von Scheißegalien (2004, 1998). You can find the lyrics here, if you can find the song online, let me know – it must be Udo’s only song that is not available on the web…
What’s hot
Plan B
What’s cold
Plan A
The German word/phrase/verse of the day
Insektenhotel