They do the rounds here just after seven. So getting up time is early, at around 6h30. Not on weekends. We expected to leave today, some time today. By now I know you won’t be surprised that we did not. We got an extension until Wednesday, when they will be able to check whether everything has healed, is fixed and working.

Staying in this room is really strange. After a while, you begin to detach from the life “out there”. Your rhythm is that of the round, the cleaning lady, breakfast, lunch, Kaffeetrinken, and Abendbrot (literally). In between there is washing, exercise, nurses, doctors, medication, therapists. More than enough to keep you busy, to feel tired, to wonder whether there really is another world out there. And then send us home (hammy…).

Just to make sure there still is, I went out for half an hour and had a look around a supermarket here on the UKE grounds. I walked around a bit dizzy and dazed: what was all this stuff for? Why would anyone buy any of this?

Back on the ward, it’s almost like home: nice, helpful people. All one would need is here. And, schwuppdiwupp, you realise how quickly one can get institutionalised, no longer able to function in a world where you have to take your own decisions, where you don’t get your day organised by someone else. A world full of supermarkets,

Patrick is clearly recovering from the operation. They decided that a drainage that had been implanted could be taken out. The wound looks clean and it’ll be a matter of days when the clips holding it together can be taken out. He is getting a different antibiotic now and we have decided first to reduce and then stop the anti-seizure medication. Today, for the first time since the operation, he was back eating, back lifting his left arm by himself when he was doing the exercises with me.

We were commenting that tomorrow is the day we’d have reached our destination on the camino. We’d go back to Madrid, have a fantastic dinner with a bottle of wine, and get ready to leave for Dublin. – To be honest, this looking-back stuff makes me so sad, I wonder whether it’s a good idea to do it at all. Remember what are, in our memory, the good times.

Because: these are hard times, very hard and testing, but these are also good times. In June of 2013, I could not have imagined Pádraig being responsive, being able to swallow, eat a little, breathe without a tracheostomy, squeeze my hand, and indicate yes and no with his tongue to (simple) questions. He is with us and that is the greatest gift.

Once you manage the following 5th step, it’ll be all downhill towards the ten steps to germanise yourself…

 

 

 

 

 

 

 

 

 

There was one item in the supermarket today I almost bought: it was the latest edition of the German magazine “Titanic”, not quire as radical as Charlie Hebdo, but similar to the Irish “Phoenix” or the US “Onion”. On its title page, Titanic has a cartoon with Angela Merkel saying “Mishap during Remembrance Service: Merkel unveils statue of Hitler too early.”

Inside the magazine, there is a picture of her and Mr Putin where he asks Chancellor Merkel: “Did you ever kill anyone?” and she answers: “There is no opposition in Germany.”

It’s all very close to the bone, but I like the kind of humour…

Tomorrow, we’ll all wake up to a day of hope, the day that death was beaten by one of us.

Over many years, I had one of the longest commutes one could have in Ireland. I had taken on a job on the other side of the country, in Limerick. It took me a few years to figure out how to do this: both, the station in Dublin and the station in Limerick were not in walking distance. So I had two bicycles: one in Dublin and one in Cork. It was about 20 minutes cycle under normal conditions on either side of the train ride. At the end of each day, I would have cycled a total of 20km and traveled 400km on the train.

I remember one Easter week cycling back home in Dublin in the dark, against the wind, and through pouring rain (just an ordinary day). I was almost home when the song “Oh Haupt voll Blut und Wunden” for some reason came up on my iPod. It was when I realised that life is like the Passion. That it was full of suffering and required huge efforts to see it through. That there are people along the way helping you up when you fall, washing away the tears, easing the pain. What surprised me most was that it was more a liberating thought than a depressing one, as i would have expected.

The UKE has a quiet room, a bit like a chapel, without it being declared a chapel. (If this sounds a bit “German”, it is.) Today, and with the day that’s in it, there was a book and on its open page was a short poem called Golgatha. It said:

Wann
wenn nicht
um die neunte Stunde
als er schrie
sind wir ihm
wie aus dem Gesicht geschnitten.

When
if not in the ninth hour
when he shouted
are we
like his spitting image.

For the past few years, this Easter Week, we took to the famous “camino” in Spain. We walked the one coming up from the South. Each year we walked it for a few days. In 2013, we  made it up to Astoria, where the Ruta de la Plata coming up from the South meets the French route, coming from the East. This week, we would have walk passed the wonderful Puebla de Sanabria, en route towards Santiago. We would have stopped in some small village to see the “pasos”, Spain’s famous Easter Week processions.

For the past almost two years, this Easter Week, we did not go anywhere. This year, we spent it together in this room that represents our world.

Oh Haupt voll Blut und Wunden ist based on an old 13th century poem in Latin on the Passion of Christ. The music to this poem was written bei Bach in the 18th century and is part of the St Matthew Passion.

O Head full of blood and wounds,
full of pain and full of derision,
O Head, in mockery bound
with a crown of thorns,
O Head,once beautifully adorned
with the most honour and adornment,
but now most dishonoured:
let me greet you!

You noble countenance,
before which once shrinks and cowers
the great might of the world,
how you are spat upon!
How you are turned pallid!
Who has treated those eyes
to which no light is comparable
so shamefully?

I’ll get over this. There will be another day. Easter is near. And with it hope. Tonight, I have a heavy heart.

 

Maundy Thursday, apparently, is what the Germans call “Gründonnerstag” – not sure what either “Maundy” or “Grün” means in the context of this very special day. – They were saying on the news that Pope Benedict washed the feet of some prisoners tonight. Today, it’s about being, or at least trying to be, humble and decent, even, or especially, when you are the leader of a pretty large organisation like the catholic church.

This morning, Pat sent a request to a great programme on the Irish National Radio Station RTÉ Raidió na Gaeltachta she, Pádraig and I were listening to in Pádraig’s room in the UKE Hospital here in Hamburg. The programme is by Sinéad Ni Uallacháin and is called Sinéad ar Maidin, Sinéad in the Morning.

Within a few minutes, Sinéad had picked up that message in which Pat had asked her to play Mexico by Mundi (the Irish version). Instead of just playing the song, and as it turned out that she knew what had happened to Pádraig, she said they were all thinking of him and wishing him the very best. She said that, unfortunately, she did not have Amhrán na Phádraig, the album Pádraig’s friends had recorded for him with her, but that she was going to bring it in next week and play a song from that album on air. For me tonight, it was a reason to watch the video to the first song on that album, Dreamboat, again – the song written by Maitiú Ó Casaide and recorded in the summer of 2014 for Pádraig by around 40 of his friends over several days in a number of Dublin-based recording studios.

By the time Mundi started to sing Mexico (“Meicsiceo“) on Sinéad’s programme, both Pat and I were in tears. When we brought Pádraig across the big water to swim at the University of Kentucky’s First Division, the whole family flew over to New York (cheapest destination) and drove a long drive to bluegrass country, to Lexington, KY. Pádraig, being Pádraig, came well prepared: he had decided to play his music during this trip and that was that. There was just no way to stop his enthusiasm for the music he had brought along. While I was driving the car down south, the music drove me bananas. A couple of days later, when we finally arrived in Kentucky, I knew that song (and a few others) by heart – with Pádraig’s voice, in my head and in my memory, shouting out the chorus, with the happiest face on earth, full of excitement and a cannot-wait-for-what-is-going-to-happen-next expression from one ear to the other.

Abair liom, ‘beidh saol níos fearr ann’,
‘s an ghrian ‘ thógfaidh ár ngrá slán,
Cibé fad gur tú mo leanán.
Is cuma liom,
Is cuma liomsa.

… I had no idea what all that meant. A couple of years later he made his dream come true and went to Mexico.

I am crying when I sing the chorus in my head, when I hear him singing as loud as he could, at the top of his voice, full of excitement, in my mind: Beidh saol níos fearr ann.

Not in my wildest dreams would we have thought, than and ever, that one day we would listen to this together again. In Hamburg. In Germany. In a room we’d share on a hospital ward.

Pádraig is still very weak and sleepy from the operation and the medication doctors have given him (we’ll stop that once we get home). Otherwise, he seems to be fine. Thank you to all who thought of him, send their good wishes, and kept him in their prayers. We all hope that he will get to a point where he can safely return to the apartment, which will, most likely, be on Saturday – he’ll be home for Easter.

Today, a nurse told a great story from her visit to Ireland.

She and a friend were traveling through Ireland ‘on the cheap’ and used to pitch their tent somewhere every night to save on accommodation. One night they had found a nice pitch and decided to ask the owners whether it was ok with them if they stayed on their land for the night.

So they knocked on the door of what looked like the owners’ house. Another couple opened the door. It turned out they were Germans too. When asked about the possibility of putting up the tent, they answered in their very German way that they had to phone the owners to ask.

While they were still on the phone trying to reach the owners, our friends with the tent just went to the next house. The person opening the door was Irish. He, in a very Irish way, said “sure, why not?” and pointed out the most wind-shielded plot on his land, offered them to use the bathroom in his house, and asked them whether they were interested in breakfast.

Und die Moral von der G’schicht: you have to leave your country to get to know it.

I know you have been waiting for this! Here it goes: Step 4 to “Germanise yourself”!

 

 

 

 

 

 

 

 

 

 

 

Today’s German Music Tip
Dagobert, Afrika – could not find the title song from the brand new album, so here is the preview of the whole album…
What’s hot
Operations – over
What’s cold
Hospitals
The German word/phrase/verse of the day
Durch den Kakao ziehen.

So today was the big day. Got up at around 5:30 to get ready. Left at around 06:30. Was sent back at the “gates” of the operating theatre. It took until lunch time before Pádraig was back up on the ward, and the afternoon to hear the good news from the surgeon that all had gone well and the operation had been a success!

He said we could most likely leave on Saturday – and celebrate Eastern at home.

Now, that was good news!

Can’t write more. Exhaustion settling in.

In case you thought it would – well, it did not happen. The operation. Instead, we spent the morning getting to know the inners of the UKE. They had to do a CT and an EEG to see whether they could go ahead with the operation. This afternoon they told us, for the third time now, that it will all happen tomorrow. – Fingers crossed.

Today, a visitor from Dublin left a little book of mindfulness with us (which I only discovered once she had left – so I couldn’t even thank her in person).

I started, not quite yet in the right spirit, to read it from the back and discovered a thought I really liked. It went like this, more or less: When we are happy, we wish the moment would last. Yet, we know that this happy moment will go away and make room for other life experiences. In the same way, when we are sad or under enormous pressure, we should remember that this experience, these feelings will not last forever either. They too will be replaced by other life experiences.

Just checked that it will be US Magistrate Judge Leo T. Sorokin who will hear our case in the US District Court in front of a jury.

I am going to keep this short tonight but know that you have been waiting for step 3 to germanise yourself!

 

Good night – keep the candles burning, the good thoughts and prayers going, the healing energy reaching Pádraig.

Loads of preparations for tomorrow’s operation. It’ll be all fine – though there was a bit of a brief scare today, more below (I have to make you keep reading) Watch out for step two to germanise yourself: it’s got to do with normcore). Also loads of preparations on getting a deposition from Pádraig’s doctors in the Schön-Klinik; preparing a mediation meeting for Wednesday (ahead of the trial); and the trial itself – with us going over on 12 April and the trial against the driver of the van starting on 13 April. It’s a civil case we have taken, the police didn’t see a reason to even cite the driver. But it’ll be a jury case and we have been told it will last at least a week. (Today I found out that the Boston Marathon will take place around that time…)

I thought a bit more about what I wrote yesterday. And tried to bring it all a bit more to the point. So here is my second attempt.

√ They are telling us our children are lost causes.

√ They are telling us, our children offer a bad return on investment so they won’t invest in them.

√ They are telling us we should take the money raised by the friends of our children to help us pay for the care the State denies them – and go on a holiday to relax a bit.

√ They are telling us, injuries acquired by our children under their care don’t matter as long as their brains haven’t recovered (which they might not).

“They” are people in charge of neurological rehabilitation in Ireland.

Are they serious? Are they just disillusioned or burnt out? Are they ignorant of advances in their field?

√ They should take note of the highly prestigious Cochrane Report on: Multi-disciplinary rehabilitation for acquired brain injury in adults of working age (Review) which concludes that:

The following post turned out longer than expected, and might not be everybody’s cup of tea nor glass of wine…

If you don’t feel like reading tonight, go straight down to the end of this post and learn how to become a good German in ten easy steps. It’s great fun (and so useful these days that I was tempted to mail it to Varoufakis, just in case:)

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There are evenings when I think there is nothing worthwhile to write about. (I hope you haven’t noticed:) There are other evenings when I am so tired that I find it difficult to put coherent sentences together. (I’m sure you’ve noticed that.)

Today, for whatever reason, I really want to share with you what I think about two really important questions. I want to avoid the incoherent sentences produced by a tired mind and late night writing, so I am starting to write a bit earlier. It’s just after noon, Pat has left to meet up with other mothers in a big rehab centre, Pádraig is having his nap….

What are these questions? –

How can I change the attitude of the neuro rehab health establishment in Ireland?

What is more important – to be pragmatic and take what we can get thus gaining in a material way, or to insist in what we believe is right, running the risk of loosing out in a material way, but affecting sustainable long-term change.

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The first question is on my mind because of remarks made by people responsible for the system over the past one and three quarters of a year – again and again.

To give you an idea, here is a selection of what has been said by health officials and leading doctors (quoting from memory): our care and rehab for persons with severe acquired head injuries here is as good as anywhere else in the world – no need to access services in other countries; instead of wasting your money on expensive treatment why don’t you use it to look after yourself, spend your money and go on a relaxing holiday; don’t worry about dropped feet, bed sores and other injuries – those can all be looked after and fixed if their brain recovers; there is no requirement for immediate rehab, better wait until they’ll have recovered a bit better to take full advantage of it; three months of rehab is sufficient; given the limited resources we have, we cannot waste them on persons with very severe acquired brain injuries; we understand your concerns but we have to be realistic.

Reality, our experience and that of other families we know, does not support these outrageous and ridiculous views of the “experts” – neither does best practice nor does the UN Convention on the Rights of Persons with Disabilities. Can we change these views, and how?

We go public with everything we’ve got.

This includes telling the public what health officials tell us parents at meetings when they are supposed to support us and help our children: that they think it’s ok for young people with very clear therapeutic needs to stay for months and years in acute hospitals, collecting one injury after the other. And to put them into nursing homes thereafter. With an hour or two of therapy. A week. That we should use the money our friends and family fundraised to go on a well-deserved holiday, instead of wasting it on care (abroad) that won’t make a difference anyway.

We can show how our children improve when they receive the right care and therapy. We need to do this with confidence and without fear of loss of “privacy”. (I know, this is a difficult one as we are taking decisions on behalf of our children’s privacy.) And – even if our children’s condition did not improve, they still need the care and attention any human being (with several decades of life ahead of them) deserves.

And play Mr President by Pink to them again. And again. And again. “What to you feel when you look in the mirror? Are you proud?”

Change will not happen quickly. But it will. Because nobody in their right mind can allow the situation as it is allow to continue.

If I think back, I had not the slightest idea of what ABI even meant, never mind what effect it has on persons, or how it should be treated. People need to know. Because it could happen to you tomorrow.

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The second question is on my mind because it’s one we are faced with on a regular basis: Do I accept an “arrangement”, do I “make a deal” because that’s the way it works? For example, do I allow my politician to push my child ahead in the queue (at the cost of another person)? Do I accept a completely inadequate service or financial compensation because it’s better than nothing? – Or: Do I know what is right and what is wrong, and do I insist in what is right? For example: Do I risk to annoy a consultant because I insist in what is right, to a point where I make a complaint or take a legal case? Do I accept one hour of therapy, or some financial compensation although I know this will never be enough?

What is more important for us and our cause? To be pragmatic or to insist in what is right? To get a quick fix and look after ourselves  – or: take responsibility, follow the “categorial imperative”, and invest in change – even if that will not come tomorrow. There are many examples I could think of where people have been told: “it’s not worth it”, “be realistic”, “don’t you know how this works”, “play the game”. It has always taken the courage of people who were not afraid to stand up to be counted, people who were not afraid to loose if human rights were at stake, people not afraid of being looked down upon as “innocent idealists” – it took these people to make ours a better world. I would feel infinitely more comfortable in their company than in the company of the rich, successful dealmakers without principles.

We are proud, we are not helpless victims deserving charity, we know what is right, and we will insist in our rights.

It’s the time of the year when we are reminded of what happened to a young man with long hair and a beard who did not “make deals” – even when his life was at stake – a man who told the powers to be that there was another way. He insisted in doing what is right and rejected what was wrong. He had a short, difficult live and, eventually, ended up dead on a cross.

I’m thinking of the lyrics of Apparatchiks by Paul Noonan and Lisa Hannigan:

These are the punches that we roll with
This is the shit
When it’s so much easier to stomach it
I’m downwind of you

Laugh now but one day we’ll be in charge

“House always wins”? – No, it doesn’t.

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Finally, if you made it to here, you deserve something lighter.

I cam across –

 

 

 

 

 

 

 

I am sure you can’t wait for step 2!

One step at a time!

I am beginning to feel at home here. Isn’t that sick? It’s very likely a new kind of syndrome I’m developing. HHS (Hamburg Hospital Syndrome) or HIQA (Hamburg in Quality Accommodation) or HSE (Hamburg Service Engagement) – if you’re familiar with the Irish health system (the WHAT? I hear you asking) you know what I’m talking about. I’ve learned to read the signs. Like: the caterers take pity on you and give you an extra slice of Wurst. Or they bring in his meal first and then mine half an hour later, so that mine doesn’t get cold while I’m helping Pádraig with his.

The honest truth is that I can’t wait to get out of here. And although Pádraig has not made his opinion clear yet – luckily, I’d say (and, if you know him, I see you nodding, knowingly) – I am sure he is just tolerating this because it’s temporary. Most likely Monday, Tuesday at the latest, followed by a few days of recovery. The average is 5 days we were told.

They haven’t figured out yet, that Pádraig is anything but average.

Today, we made sure that, finally, the request for logo therapy went through, along with a request to see an orthodontist. Who did come was the gastroenterologist (don’t worry, I had to look that up too). Like so often, when we talked to him we wondered why on earth we had never talked to a gastroenterologist before??????

He immediately canceled the smaller of the two procedures planned for next week, i.e. to replace Pádraig’s PEG. Apparently you don’t have to change a PEG for 5 or even 10 years – or until it gets porous. Yes, his words. To me it sounded a bit like a motor vehicle sales person talking about the warranty for the car he is selling: 30,000km or 3 years – whatever comes first.

More importantly almost, he told us that stomach’s, if you don’t use them, shrink. Stomach’s also don’t tolerate too much ‘normal’ food if they have been conditioned over many months to just take in easy to digest tube feed, or Sondenkost. Therefore, even though Pádraig wants to get lots of tasteful, nice smelling, full-of-texture food, he will have to hold back a little and only slowly increase the amounts he is eating. How will that have to be done, we asked — and were told that they will send a nutrionist to advice us.

Yes, you’re absolutely right. We will make sure that, while we are here, we will get the absolute maximum out of every day. We are getting expert advice from a gastroenterology, a urology, a neurology (he checked Pádraig’s bone flap replacement), and an orthodontic consultant, from a dietician, and from therapists while we are waiting for Pádraig’s procedure. Considering what we’re getting out of it, the wait has been worthwhile so far. No doubt.

(Seos – I was trying to keep writing as long as I can to be able to listen a bit longer to Daniel Barenboim, but I won’t make the full 02:19:33 tonight. Should have started earlier:)

Today, it’s one year and nine months since the accident. And there are so many convincing signs that Pádraig is hanging in there, that he never has stopped trying, and that he has achieved so many things that others said would never happen.

Tonight, I tell them: this is just the beginning. Watch out!!!

There are so many ordinary, everyday things I never write about.

Phone calls. Someone rings Pádraig. I put the phone to his ear. He just keeps a straight face. Or he smiles. Or looks surprised. Makes an attempt to say something. But can’t (yet!). What is it like for the people talking to him?

Body hygiene. Getting washed. From your teeth to your toes. What kind of sensation is that?

Getting turned. Every 3-4 hours. The term itself is so strange.

People talking in the room. Doctors proposing treatment, discussing operations, thinking loud about how to handle the anaesthetic. Hello! Are you talking to moi?

Food. As I write it I feel so strongly that we must get rid of those plastic bags with this really unattractive brown liquid that drips through a plastic tube into his stomach. Let’s go for really sweet, really savoury, really hot, really mild, really sour, let’s go for appearance,  taste, texture, and smells.

Communication. We ask whether he likes or dislikes stuff, whether he is comfortable, whether something hurts (I never ask him though whether he likes my music or my jokes). He can tell us with his tongue. But what if he wants to say something and we are not asking they right questions? If he wants to initiate the ‘conversation’?

The list could go on.

Before my head hits the keyboard, some news: you know we’re planning to go to Lourdes in May. Today, I was wondering whether our Lady knows that we’re on the way and send us a miracle as encouragement. Here is what happened: I stretched out his left arm, asked him to keep it there for a moment, then asked him to lift it up, and he moved the lower part of his left arm up to his chest. Not once, but twice, and he would have done it more often had we continued with the exercise.

I am convinced that soon Pádraig will be able to eat and drink enough to keep him going. Even if he didn’t eat the semolina, soups, pureed potatoes, meats, veggies, yoghurts – he would just need to eat/drink five 200ml really tasty Fresubinis to get his calories.

Time to go to bed.

PS1:Today was the last day to get a regular registration for the Hamburg marathon. Last year I had to apply for late registration which was a bit nerve-racking. This year I (just about) made the deadline. Can’t believe I’m doing this.

PS2: Two nights ago, Maria was elected chair of the Irish society in TCD. When she told Pádraig over the phone last night, he looked so so happy and, no doubt, was so proud of her. I wonder what he said in his head to her…

PS3: They’re playing Stairways to Heaven on the radio. There’s a lady who’s sure all the glitter is gold… I was so proud when I learned to play the song on the guitar, that I played it at every party (remember ‘parties’?) I went to – I never got tired playing it, though I know I lost a few friends in the process… It was the music that counted. Who cares about people, especially when they don’t appreciate really cool, great music???!!!