Relaxed

Today was a relaxed day. (I don’t count work in here:) There was no panic, nothing bad happened, no set back, no upset. I was on my own with Pádraig and we had, it seemed, all the time of the world. There are few of those days these days.

UnknownI did most of the talking. There was no pressure to do anything. Finish anything. Get anything done. The room was really quiet. The voice from the women down the corridor was barely audible. The autumn sun was shining into the window. Pádraig was so relaxed the machines were getting ready to sound the alarm because of a low heart rate. He was breathing for a long time with the tracheostomy completely blocked off, so he was breathing in and out through his mouth, completely relaxed. It’s strange to say and feel like this, but this afternoon had a real magic. Which I will treasure for a long time.

Tomorrow morning, I will see Pat in the airport when she’ll be arriving, and I’ll be leaving for Ireland. Work. And on Monday, of course, the marathon. There’ll be a group of us, I think: Ciara and Donal Earls who are doing fundraising with their run – their first marathon ever! Please support them generously. And there will be Cian who ran the Hamburg Marathon with me, though I don’t think he enjoyed it – he was in such a rush! And Fergal who got me into ‘running’.

imagesI came across a quote by the late John McGaher who said that “One of the differences between life and writing is that writing always has to be believable whereas life isn’t.”  Isn’t that so true! – But: Sonne kommt am Ende doch.

Oh – I almost forgot: if you are going to the Oireachtas, you’ll be among the first who’ll be able to lay their hands on some really incredibly magic piece of music, song, and poetry. There is a rumour out that the Dreamboat will hit Killarney the weekend after next!

Today’s German Music Tip
Philipp Poisel, Zünde alle Feuer (2010). Kind of a good song, with a really exceptional video.

Sonne kommt 
am Ende doch. 
Und weißt du nicht 
ich liebe dich. 
Und alles was am Ende noch so bleibt

Zünde alle Feuer. 
Plauder auf mich ein. 
Zeig mir dass ich lebe, 
wenn du wiederkommst.

What’s hot
Relax
What’s cold
Panic
The German word/phrase/verse of the day
Keine Panik auf der Titanic!

Normality

UnknownPádraig’s doctor came in to say that the EEG they did today was better than the previous EEG, meaning that he was going to reduce the anti-seizure medication straight away. (He had stopped the medication meant to increase Pádraig’s level of alertness earlier when it had caused problems in the form of increased seizure activity – but had increased Pádraig’s daily dose of the anti-seizure drug.) A bit of good news.

Tomorrow, I’ll be going to have a look at new apartments being built by our Wohnungsgenossenschaft. We will need a bigger apartment when Pádraig is discharged from the Schön-Klinik and his treatment continued through day care. The apartments being built are all accessible via an elevator and many have a balcony. Hopefully, there will be something suitable and, hopefully, we are in with a chance to get one of them.

I am so hopeful that Pádraig will make significant progress when he’ll move out of the Institutions. One of the doctors referred to our description of life in hospitals as “Institutionskoller”. I know the comparison doesn’t work, but I think I can much better understand how people who have to or choose to spend years of their life, or their whole life, in institutions. It feels like as if someone had clipped your wings, broke your spirit, and ‘taught’ you that your only chance was to ‘fit in’.

There were times when I thought I could explain to the ‘institutions’ that if only they considered a few simple words of advice, the world in general, and the part occupied by them in particular, would instantly become a better place. In the meantime, i have learned, the hard way, that I cannot change institutions. Worse, I cannot even change people. So I concentrate on what is possible: work with them. At times, this works, at times, it’s very difficult – and on other occasions (few, thankfully), it’s just impossible.

I am so convinced that Pádraig will make really big steps forward out of the institution because that is when he will be less dependent on doctors (because he will be more physically stable) and when the impact of the hundreds of people around the world supporting him with their prayers, their thoughts, their energy, their love, friendship, and solidarity really will make a huge, huge difference to his recovery. There will be real life, with a routine, with things to do, with places to go to – and none of it dependent on doorkeepers. – Don’t get me wrong, Pádraig got great help, care, and therapy; without it he would not be where he is today.

But I really look forward to a bit of normality. Who wouldn’t? – Huups, did I really just write this? Well,…. I don’t really like ‘normality’. And on second thoughts: maybe “Institutionskoller” just means that I have this urge to break out of ‘normality’, out of the institutions. Maybe what I’m looking for is not the ‘paved road of normality’ (van Gogh) at all, but the wild flowers of the anarchic boreen?

Gone

disappearedThey’re gone. Disappeared. Poof! – they just went up in smoke.

Today, we had one of our regular meetings with Pádraig’s doctor. One of the fortnightly half-an-hour kind. One where I bring a list, not to get lost.

Today was different. The Landesärztin joined in, she came to see Pádraig and to chat to his doctor to see how he was and what the plans for his further treatment were.

A few things emerged: they are proposing an operation to fix his bone plate that has failed to join with his skull. This would be done in the UKE (remember the UKE?!). They also want to get him off (or at least down to more sustainable levels) the medication they put him on when they were thinking his level of alertness could be increased by some other drugs. (I know this sounds a bit complex, and it is.)

What transpired during the meeting was that, at least for the time being, Pádraig has lost the “Keime”, the bacteria he had picked up over the past months in hospital. Unbelievable. And a bit of good news.

Poof! Gone!

Today’s German Music Tip
Blaue Jungs Bremerhaven, Hamborger Veermaster (2002). Traditional, very traditional song about Hamburg and four mast sailing ships…
What’s hot
Poof!
What’s cold
Operations
The German word/phrase/verse of the day
Ballerkopp

Scratch

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In the middle of nowhere…

Leaving behind us the alien, foreign city of Dublin
My father drove through the night in an old Ford Anglia,
His five-year-old son in the seat beside him,
The rexine seat of red leatherette,
And a yellow moon peered in through the windscreen.

UnknownThis is the beginning of the Irish poet’s Paul Durcan poem “Going Home to Mayo, Winter, 1949“. Pat heard it this morning, or a reference to it, on the radio. She told me about it and how it reminded her of me about to bring builder’s supplies, cement, tiles, to this really really really run down stone cottage we had bought (after Pádraig had spotted it in ‘Buy and Sell’ pre-internet time, remember pre-internet time?), lost on a bit of soaking wet land in the middle of lovely Leitrim. It was after work, in the winter, it was raining and dark, and Pádraig decided that he wanted to come with me. When we had passed all the towns and villages, Mullingar, Edgeworthtown, Drumlish, and Lake Keeldra (affectionately known as Cloone Swimming Pool), when there were no more villages left, just a very bad, very narrow, very dark, and very wet country road, when the bottom of the completely overloaded car hit the road hard each time I had missed to spot a pothole (and there seemed to be millions of them), I remember that I heard this voice of young Pádraig beside me, asking:

“Papa, is this the middle of nowhere?”

It was.

Today, his nurse told us that his colleague had told him that Pádraig during the morning being-washed-routine had lifted his right arm over to the left arm, had scratched himself, and had moved the right arm back to its original position beside his body in the bed. Had we seen this before? – No, we had not. But here is to another first!

How good it is to hear about good, exciting progress like that. Not to hear about, for a change, another step back, being put on panic station, making you feel like as if you were, right in the middle of the city of Hamburg, moving through the middle of nowhere, with just a yellow moon peering through the window.

Luck

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!

Hearing

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UnknownLooks like my long-planned never-realised collection of train songs is coming together finally, and completely unplanned. The ‘Georgia’ post got a comment with two links to the Wabash Cannonball – I knew the song, but had never realised that the Cannonball was not a cannonball at all but a train! The links in the comment to the post point to a version by Johnny Cash (always good) and Boxcar Willie (whose name just gives it all away:). Both really good versions of the song. When I looked the song up on youtube, I found one by the Chieftains with Ricky Skaggs – which is really really good, and worthwhile checking out.

All those train-songs are about love, loneliness, going away, going back home, leaving into the unknown, returning to the long lost home, about adventure, glory, and misery – all those things that make life exciting and sad. Anyway…

Unknown1Anyway – today, we had a hearing. To be more precise, Pádraig had. The kind organised by a judge. Now, if you are living in Ireland, you have a certain idea of what a judge should look like… which is why I didn’t realise that the young stylish woman entering the ward with us this morning was the judge until we were walking down the same corridor.

The hearing was to follow up on an independent doctor’s report on Pádraig’s health. The judge explained that this is the way it’s done in Germany because of our not so glorious history dealing with persons like Pádraig. What made us cry (and, I think, moved the judge) that this was not about what it was about – it was about stating in a very formal administrative German way that Pádraig will, most likely, need someone to speak for him for the coming years.

It was about making it almost a public matter of fact that this all the wrong way around unreal nightmare-like situation is not one where you pinch yourself and wake up in a sweat, you wake up in horror, but you wake up; instead, there is this realisation that it is a situation that you can get certified by a German judge in a hearing, not in court, but in an isolation room in a hospital, with a nurse cleaning up in the background, the judge going through the notions, fully knowing what she is doing, in all her own youthfulness, not judging, really, but consoling two parents who have given up pinching themselves, knowing what they are doing with their son, in his youthfulness, in their helplessness, not giving up, never giving up, but struggling with this upside-down, wrong way around situation that is so impossible to grasp, so hard to deal with.

So, here is to hope, to solidarity, to shared strength, to never giving up, to tears and to laughter, to desperation and to stamina, to life, to An Saol. Pádraig-style.

Zuständig

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The trains are back running again and I am getting close to Hamburg on one of those really fast trains, a bit like BMWs on rails.

When I arrive I’ll get the S1 (so many of you know this German ‘DART’ from your visits) which should give me about an hour in the hospital.

It was strange yesterday to ring the ward rather than to visit Pádraig. And the whole ‘last train out of Hamburg’ business was a bit stressful. Then – to talk to Pádraig’s nurse and a doctor, rather than to see him and talk to him. Not to be able to ask all the questions I wanted to ask. To probe the assessment they gave, to question the need for oxygen or suctioning. There is this nagging feeling that Pádraig maybe did not really need it. That, maybe, it was a very careful and cautious night nurse who, maybe, did not know Pádraig terribly well and decided that the easiest and safest way to deal with a low oxygen level they observed on their monitors (maybe caused by a cough they were not aware of because they are not in the room with him) was to give him oxygen. For several hours.

When Pat got back to Hamburg this morning, she went to see Pádraig and the same thing as yesterday had happened again. His oxygen levels had dropped early in the morning and they had put him on additional oxygen. Dr O’Byrne  took him off the oxygen and, not to our surprise, Pádraig managed fine. The oxygen levels went down when he coughed, but went up again after 2-3 minutes. Not a bother.

UnknownHe has not been on oxygen for months now, and we don’t want to go back. We want to go forward and Pádraig is ready for it. When we are there with him, for whatever reason he does not need oxygen, nor does he need suctioning – all of which reinforces our decision to continue with Pádraig’s treatment in a different environment, in an apartment here in Hamburg, one we still will need to find. (We just need to get through to the person-‘zuständig’.)

Several doctors here told me that Pádraig will need and get 24 hour care in our apartment, given that he has a tracheostomy. When l asked an expert in the field what that means in terms of people, he said “around 5.3 full time carers”. You need that many people to provide 24 hour care, 7 days a week, including holidays and sick days and other out-time. I was surprised. On top of that, he will need and get several hours of therapy. And we will be there, of course.

Finally, a bit of good news: We finally got the head support for the lifter cloth we had enquired about a number of times, for quite some time. When Pat asked one of the therapists about it again today, it didn’t take long for them to find it and leave it with her. It just shows that if you keep at something, you will eventually encounter a person who will make an effort and help.

Georgia

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.

Screen Shot 2014-10-15 at 20.40.49No 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!

Screen Shot 2014-10-15 at 20.44.23It 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"!

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.

Relief

Have you heard about ‘comic relief’?

Screen Shot 2014-10-14 at 21.38.15I 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.

Paperwork

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.

images1Someone 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.

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