Saturday night, out in Tating. We wanted to stop by to listen to the music in Garding, as we do on Saturday evenings when we can – but the place was closed. The town looked abandoned and deserted. So we went out to the seashore and smelled the sea, felt the wind. It’s funny how far back you can remember smells. The smell of the sea tonight transported me back to times when life was simple.

Pádraig today had two lovely Irish visitors. I am sure he was really happy not just to have us around him, but to hear the voices of his friends around him. They rang another friend in Ireland, who talked to him over the phone. At the end of the phone conversation, Pádraig said ‘slán’, good-bye, not in a very loud way but it sounded so clearly that he took everybody by surprise.

When Pat arrived today on the ward at around 11:30, a nurse told her that she would have to come back when visiting time started. Really. – There was no reason, other than that she could do this…

This coming Monday week will be the Dublin Marathon. Please consider supporting Donal Earls and Ciara Heneghan who will both be running the marathon to raise funds for Pádraig. A friend of ours will also run, as will Cian. So, it’ll be at least five of us leaving at 9am this Monday week. Wish us luck!

For tonight, I’ll have to finish, falling asleep almost as I write. So, good night and sweet dreams!

This morning, I was on the last train out of Hamburg. Then, Germany’s train system started to shut down.

L.A. proved too much for the man…
So he’s leaving a life he’s come to know,
He said he’s going back to find
what’s left of his world
The world he left behind not so long ago

My plans to visit Pádraig this morning did not work out. Instead of going to the hospital, I went really early straight to the station when I heard that the train drivers would go on strike from 2pm.

No one on the train knew how far it would make it. Would it just stop at 2pm? Would the train driver just walk away? Not the friendly lady on the free Bundesbahninformationstelefonbeantwortungsdienst nor the train conductor knew. After four hours of uncertainty we arrived in Frankfurt. The magic time of 2pm past. And the train continued to Mannheim where I had to change trains. Of course, there was no connection. The friendly lady from the Bundesbahnnahverkehrsinformationsdienstaufsicht said she didn’t know when the next train to Rot-Malsch (where I am working today and tomorrow) was going to leave – she’d know, she said, not when the train was going to come into the station but only the moment it was going to leave. Which is when I decided to get a taxi for the remainder of the journey.

So much for German Pünktlichkeit und Verlässlichkeit!

It was the second day since the accident that no one had visited Pádraig. When I rang the hospital they told me that his oxygen levels had gone down at times this morning over a period of 30 minutes or an hour. They had to suction him and give him oxygen for a short while. In the afternoon they did an x-ray just to be sure that there was no infection developing. There didn’t seem to, and whatever had happened in the morning had disappeared in the afternoon.

For some reason, this stuff has happened over the past week or two, in the morning only. And only when we are not there.

You know, I spent close to 15 years on the train to the west of Ireland. I made friends on that train, spilled coffee over my keyboard, missed to get off at Limerick Junction to change trains, wrote articles and prepared presentations; there were trains where you had to open the door by pulling down the window, stick out your hand, and turn the handle; trains, where you had to wear thick wooly jumpers in the winter; trains, where you could stick out your head and feel the wind in your hair.

Watch out for the “huh huh” at 1’10”!

I always wanted to collect ‘train songs’ and make a CD or two with them. Never managed to do it. Tonight, I listened to one of the best ever songs, not just one of the best ever ‘train songs’: “Midnight Train to Georgia”, and I cried. Watch it here, listen to the brilliant voice of Ms Gladys Knight and be in awe at the fabulous dance routing by the Pips, and, of course, the lyrics:

Ooh, he’s leaving
(Leaving)
On the midnight train to Georgia, yeah, ooh y’all
(Leaving on the midnight train)
Said he’s going back to find
(Going back to find)
Ooh, a simpler place and time, ooh y’all, uh-huh
(Whenever he takes that ride, guess who’s gonna be right by his side)
I’ve got to be with him
(I know you will)
On that midnight train to Georgia
(Leaving on a midnight train to Georgia, woo woo)
I’d rather live in his world
(Live in his world)
Than live without him in mine

The whole song is just so incredible, but the key lines are at the end: I’d rather live in his world than live without him in mine. I know, we’ll be going to Alaska. Can’t skip that. But on the way back, we might just get the Midnight Train, the Midnight Train to Georgia. And guess who’s gonna be right by his side? A million friends from all around the world, on that train, going to find, a simpler place and time! No more “zuständig”, no more Bundesbahnnotdienstinformationsauskunftsstelle. No more suctioning, oxygen, x-rays and CTs.

Have you heard about ‘comic relief’?

I just looked them up and saw that their work to “bring about positive and lasting change in the lives of poor and disadvantaged people” is mainly financed by fundraising on “Red Nose Day”.

It made me think that one way of financing An Saol could be to organise ‘comic relief’ sessions, real comic stand-up comedian sessions, telling stories from the ‘inside’. OK, you would need to have a good story-teller, and you would need an audience with a special kind of humour. But I am sure to have enough material to cover not just one night, but a weekly session over a year at least.

Renting and living in an apartment in Germany (think: ‘Durchzug’), going on ‘therapeutic’ walks in the park, negotiating with nurses the next shave, preparing for the HIQA visit, being the dedicated ‘hand-desinfection’ nurse, person-‘zuständig’ – the list is endless.

I’d love to do this. Really. And as a father who has gone through all of this myself, I probably could do it without being accused of lacking respect. It just requires a slight adjustment in perspective and: ‘boom’ – you’d have tears of laughters on everbody’s cheeks and their body would be shaken by uncontrollable fits of laughter. It is that tragic.

They say everything can be replaced
They say every distance is not near
So I remember every face
Of every man who put me here

I see my light come shining
From the west down to the east
Any day now, any day now
I shall be released

(There is a nice version of this by Bob Dylan and Norah Jone on youtube – BUT by far, by far the coolest version of this song by the coolest people ever is that from The Last Waltz – they don’t make music like this anymore, featuring: Bob Dylan, Ringo Starr, Ronnie Wood, Joni Mitchell, Neil Young, Neil Diamond, Ronnie Hawkins and Van Morrison.)

Pádraig today was in his wheelchair when I arrived at the hospital. The therapists wanted to fit his more sophisticated headrest which he has had for many months. It is so much better and provides so much more support for his head than the airplane-type rest that is so short and sits so far back that we always have to get cushions to fill the gap between headrest and head.

Pádraig keeps trying really hard to talk. It’s hard, still, to make out words, but sure he is trying very much. Any day now, any day, there will be words.

Can’t wait.

In the meantime, I’ll keep dreaming of my first comic relief session on stage in the Laughter Lounge – knowing and remembering perfectly well that one piece of advice my son gave me, not once but several times, was to never ever try and tell a joke. At least not in English:) – When I tried before, and here I’m honest, people were politley waiting for the punch line of my first ‘joke’ when I had already moved on not to the second, but the third.

Today, I worked on the post-Schön-Klinik phase of Pádraig’s treatment in Germany. There are a few things one has to do and get registered with to get things going. As it turns out, Pádraig doesn’t fit in to any of the standard cases very well.

Nothing new here. What is new is the difficulties that causes.

Someone had given me a form to fill in for Pádraig to get a Behindertenausweis, which is kind of a certificate to say that you cannot do certain things. The Versorgungsamt which is open Mondays and Thursdays is where you have to go to get this organised. So I went, walked through long and empty corridors until I found the ‘Beamter’ who was dealing with “Sch”. I explained what I was looking for and was told that she was not ‘zuständig’ (a really important word in Germany, because if someone is not ‘the right person to talk to’ or ‘the right office to deal with the matter’ then have to find out who is, which, given the size of the German administrative system, is not that easy).

They were not ‘responsible’ or the ‘relevant’ office because Patrick is not registered in Hamburg. I registered him in Tating just before he arrived back in Germany – because (1) this being Germany, you have to be officially registered somewhere if you don’t want to get yourself into deep trouble, and (2) although he was not going to live in Tating, I could not have registered him in the Schön-Klinik.

Easy problem to solve, I thought, and went off to the next ‘Amt’ to register him in our Hamburg apartment – although he is not living here either, at least it’s in Hamburg. This Amt was huge and empty, but – unfortunately – did not have any appointments available to register: until November!

Back home, I rang the office responsible for issuing certificates that would allow Pádraig to apply to another office that allocates apartments suitable for disabled persons and get preferential treatment because he will need this pretty soon – and was told that he would only be entitled to one if he had lived in Hamburg for the past three years.

i explained the situation that he didn’t move from another Bundesland here and that in Tating they did not have that kind of accommodation available. Eventually I was told to ring back tomorrow – but not to have much hope for getting this certificate.

The above is just the bare bones of hours of talk with different offices.

The essence is that (1) if you represent a case that is different from the mainstream, you’re in trouble, and (2) administrators deal with rules that have no exception, which means you’re in double trouble.

Pádraig was ok today – not too alert, but ok. I find it increasingly difficult to think of him being in his room by himself for hours, with just the occasional check by the nurses. When we are there, he is fine. There is no hustle with anything. He is comfortable in bed and if he coughs or needs some help with whatever, we are there to help him. We spend so much time with him, but, obviously, not the whole day. So when he is by himself, coughs, and needs help, he doesn’t get it, at least not immediately. We need to get all this paper work organised, find an apartment were we can start the next phase of his treatment, and settle down.

Today, I started to work on the incorporation of An Saol as a non-profit charity. It’ll be official one day soon.

I like making plans. What about you?

There’s nothing like it. You can let your imagination run wild! The next journey, an exciting project, cooking a big family meal, how you’re going to change your life radically, world peace!

Two days ago, I planned to finally migrate to my new laptop. It’s faster and has more storage. What I’m seeing right in front of me is a message from Apple telling me that a programme is “transferring your information” from a back up disk to my new laptop. Apparently, it’s going to take just another 9 minutes. The problem is, I don’t trust this message anymore. It’s the fourth time I’m trying this. I even left it running for an entire night and when I looked at it the next day, it still needed another 6 minutes.

Planning is great. It’s the implementation and delivery that is often disappointing.

Forward Planning is Fun

Over the past week or two, we have been making plans for the post-Schön-Klinik-time. We have talked to people, looked at different options, and have decided that we would like to organise the post hospital phase of his treatment in our apartment. For that, we will have to find another apartment and then move, soon. Although we haven’t been given a date for Pádraig’s discharge from the Schön-Klinik, we know that it’ll happen within the next couple of months in all likelihood.

Then again, plans never work out, do they? – The message on the screen of my new laptop is telling me know that it’ll take another 22 minutes “Transferring your information”.

Today’s German Music Tip
Ulita Knaus, Wir checken Deinen Marktwert. Ulita is co-founder of the “Jazzclub im Stellwerk” in Hamburg. This is kinda jazzy, fun music. In German!
What’s hot
Plans
What’s cold
Plans
The German word/phrase/verse of the day
Pläne sind Träume des Verständigen.
Ernst Freiherr von Feuchtersleben (1806 – 1849), Austrian philosopher, doctor, and writer.

It’ll have to be another short post tonight. One reason is that whatever is supposed to be easy with an Apple Mac when you migrate to a new machine turned out to be really complex when I tried it today; I’m still using my phone instead of my laptop to write this (remember when phones were used to make phone calls?).

The other reason is that Pádraig is keeping well. With a good friend from Ireland visiting over the weekend, as well as his older sister.

He keeps trying to make a real extra big effort to talk, say things that are easy and simple for us, complex and difficult for him. Of course, we have to be careful not to be over-enthusiastic, but we have no doubt that he is trying to respond to people who are talking to him

Tonight, when we left, he was so close to being himself, handsome Pádraig, saying ‘slán’ to his friend and family when we left. We are so sure he did. No doubt.

And this is just the start! Right?

Upgrading my laptop – it’s going to take another 25 hours. Don’t ask me why! I hope that some miracle will be happening during the night and it’ll all be done by tomorrow morning.
We’re just back at the apartment after a nice meal in town celebrating 29 years together (it’s more like 34 years altogether:). When we were out we talked a lot about what happened today when Pat went in to Pádraig and then myself: we are convinced he said ‘hi’ and ‘Hello’; and when Pat left him, he said ‘slán’ – with a. very weak voice, but nonetheless!
Writing this on my phone – was ‘t even sure whether that was possible an hour ago. But it’s slow. So I’ll give up a and go to sleep – an early night, for a change:)
Hi and slán!

Tonight, 29 years ago, would you believe it, I was sitting with two German friends in the house of two friends in Firhouse (I think) who had vacated their house for us. We were following the ‘book’ on how to organise a wedding in Ireland. One of the rules in the book apparently says that the groom has to spend the last night before the wedding somewhere with his friends. I’m say ‘apparently’ because I have never read or even seen this ‘book’ and have always believed what my Irish family had told me about Irish weddings.

Sutton Castle on the outskirts of Dublin where we got married, 29 years ago tomorrow.

Another ‘apparent’ rule, I was told, is that Irish women retain their maiden name after they get married – which causes a lot of confusion in Germany where Pat is called invariably ‘Frau Schäler’, which she finds really annoying, but has decided to tolerate rather than to fight it:)

Pat and I met 34 years ago and it took us just 5 years to make up our minds.

Neither of us would ever have thought that we would find ourselves one day where we are now. We would never have thought how important our relationship would become to us when facing life.

Pádraig was getting back to ‘normal’ again today. We sat him out in his wheelchair, he ate a bit, he cycled on the MOTOMed viva!, I shaved him, Pat cleaned his teeth. Whatever is ‘normal’ has changed but we will have to find some level of ‘normality’ at some time in the future. Life will have to become more predictable. It’s when you feel at the mercy of the gods who play their cruel games with you merely mortal soul, entertaining themselves watching you struggling, throwing at you challenge after challenge, that you wish for calmer seas.

We had conversations with two social workers, one in the Hamburg housing unit, one from the Schön-Klinik. They were the kind of conversations where I breath in, and out; in, and out. When I feel empty and horrified.

Tonight I’m thinking about my two German friend, one dead 17 years now. About the plans, the hope, the dreams, Pat and I had. Sitting in a kitchen, close to midnight, in Hamburg. Writing. About what.