Here am I am here. The clock says 00h25, the computer says 05:25, my mind doesn’t know what that all means. When I (literally) fell asleep last night I did not sleep through. Instead, I woke up every hour or so looking for Pádraig. That I was on a different continent only dawn on me when i woke up and looked around.

It really seems that there will not be a trial. The lawyers are still negotiating and will, hopefully, be able to bring this case to some conclusion that we can all live with.

One of Pádraig’s friends had organised for her friends to meet with us while here in Boston. It is really amazing to see how much the Irish row in behind you when you’re really in trouble. They also told us how many people had heard about the accident and were, are ready to help. It is truly amazing. While there won’t be much time while we are here this time, we will follow up on our conversations here with our friends, and will work with them to raise the level of awareness about the consequences of severe bicycle accidents, and the lack of neuro-rehabilitation programs in Ireland.

You couldn’t imagine how strange these days here in Boston feel. For so many different reasons. We will have more meetings with different parties over the next two days.

Tiredness is catching up on me…

Just a very short, early morning post.

We arrived well in Boston. There will be not trial tomorrow, but negotiations between the attorneys. We’ll see tomorrow…

More tomorrow.

First Day back in the apartment.

The bus that never showed up – although, it does look slightly over the top…

It’s funny, how quickly I had become institutionalised. Like in any institution, our day was not really ours. It’s taken over by other people and we just had to fit in. Just after 7am, the doctors make their round, they hardly knock on the door, come in with 4 people, switch on all lights and briefly tell you what’s going to happen next. In our case, on most days that wasn’t that much, so off they went. Then came breakfast, the cleaning lady, someone asking what we would like for lunch, then lunch at around noon, coffee at 2pm, dinner at just after 5pm. And then what? Therapists, doctors, nurses came in from time to time to fill in the gaps.

But none of that is the way one usually would live, or sleep, or eat, or drink, or meet other people.

In the end, it was almost sad to leave our new friends on the ward behind. They had all been very kind, really nice people, and very helpful.

But I missed a “bad” take away, some really “good” cooked food, our apartment, my bed, being in charge of the day myself (well, more or less)…

All that is back now. All the operations are behind Pádraig. And a great time, with great weather, a family trip to Lourdes, Pádraig taking on life, recovering control of his body and its functions, being back in charge of himself, being able to eat, drink, communicate – very little very slowly but better every day, all ahead of us.

Finally, there is one thing the Irish and the German have in common: their love for potatoes! – Here comes Step 7 to Germanize yourself!

Today, we left the UKE. Eventually.

There was a bit of a panic in the morning when I was told that the ambulance to take us back to the apartment had been ordered and would arrive with the hour. After two and a half week, my stuff had had a great time, it seems, multiplying. So where I had had two pieces of paper, there now were heaps. Same with books, toiletries, and even socks (you might remember how important socks can be).

We were all ready by 9am.

Waiting.

At 10am, the first ambulance arrived which couldn’t take him because “Pádraig is too tall”, with me insisting that it was their equipment and car that was “to small”. Anyhow, this is when they ordered the BUS from the Feuerwehr. Now, as we all know, the Feuerwehr is supposed to turn up in no time when you call them.

We were ready.

Waiting.

Then the second ambulance turned up, as it turned out it was the XXXL version with an extra wide stretcher to take patients of up to 250kg. No sign of the Feuerwehr. And the XXXL stretcher didn’t work for Pádraig – in case they would have had to apply the brakes in the car, Pádraig would just have slid through the straps, it was all far too wide. What would be next?

We were ready.

Waiting.

After 4pm, the third ambulance arrived, this time with a stretcher that was still far too short, but one that could just about take Pádraig.

Finally, we left the hospital.

The car itself was one of those big Mercedes vans, big enough for his feet not to stick out of the back, and even the doors closed without having to push his feet and knees up.

By the time we arrived at the apartment, it was 6pm. I spent the night getting organised again in the apartment, happy to be out of the hospital with Pádraig’s operation over, ready to start where we left two and a half weeks ago.

It’s a complete myth that Germans drink nothing else but beer. Though they do drink a  lot, much more than the Irish according to a website I found. Per capita, only the Czechs drink more beer in Europe than the Germans (107 litres) whereas the Irish are far down the list with just 779 litres, beaten even by Finland.

Yet – when you come to Germany, don’t drink beer. Become a real German and drink a Schorle. Apfelsaftschorle, to be precise. There’s nothing like it. And your German friends will look at you full of admiration, asking “do you have this in Ireland, too?” More on Schorle later…

Today there was another “First” day.

Remember, we wanted to get rid of the tubes stuck into Pádraig. The first he managed to get rid of was the tracheostomy in January. Today, following last week’s operation and a few x-rays, they blocked his catheter and told us that if he continues the way he is that we should remove the catheter altogether within a few days.

Look at this picture.

If you ever saw the side of Pádraig’s bed before, there were always tube hanging around. Tonight, it’s clear.

Although they said this a few times before, I believe that we’ll be heading back to the apartment tomorrow, after two and a half weeks. The longest I’ve ever stayed in hospital in my life. It’ll be great!

So, here is a piece with everything you ever wanted to know about Schorle and step six to germanise yourself!

Good Night!

There was a bit of action today here in the room. Some brave nurse had decided that Pádraig was going to sit in their special chair: like a wheel chair with less cushioning. So, with the help of a couple of nurses and a scared physio, I lifted Pádraig up, turned him around and sat him down into the chair. And after two hours, I did the same in reverse. You wouldn’t believe how proud I am to have been able to do this. OK, it was not a really wheelchair but it worked, meaning that we could manage, if needs be, without a lifter.

Preparations for the trial in Boston are continuing. I really cannot believe that Pat and I will be flying together to Boston in just a few days’ time. To hear all the details again.  How will we get through this. – But, there’ll be another trip in May!

Today I heard that we’re going to get some help from the Maltese Order to get Pádraig (and ourselves) to Diepholz, the most northern parting point of the special 24-hour train to Lourdes in May. It’s close to two hours’ drive from Hamburg towards the south and a fully-ledged ambulance would have been prohibitively expensive. Can’t wait for it.

Tomorrow is discharge day, if all the tests in the morning work out well. Again, fingers crossed. We’ll have to get outahere!

Today’s German Music Tip
Eric Burdon and Udo Lindenberg, Verdammpt, wir müssen raus aus dem Dreck. Probably the worst quality video on youtube, but still a great performance by two great auld rockers. The quality of this version is slightly better and older: about 35 years! (Watch out for Eric’s head band! – Who needs Woodstock if you can just watch one of Udo’s concerts?)
What’s hot
Moving, Sitting, without lifter
What’s cold
Trials
The German word/phrase/verse of the day
Für’n Appel unnen Ei

We’re hanging in there, but at least I am beginning to get the hospital syndrome. You notice it when you are going out for a few minutes to a shop and the only thing you want to do is get back into the room. There is also a constant tiredness, paired with a lack of self-determination – which does not have any resemblance with life outside.

Since we have lowered the anti-seizure medication to be stopped in another couple of days, and with some time having passed since the operation, Pádraig is getting more alert again. He started to eat again and to move, at least a little bit. It really beats back home the message that we will have to try very hard to get him back into every-day “training” as soon as possible.

His scars have been healing very well and any bruising that was there is disappearing. Every operation is scary but this one, and I almost forgot this, this one was an operation we decided to go for to allow him to get rid of tube number 2. Tube number 3 will be the PEG, and if he gets back to the level of eating and drinking that he was at before the operation, that won’t take too long.

There’ll be loads of stuff happening this week and with every day that passes, it becomes more likely that the insurance company of the driver who hit Pádraig will insist that the case goes to trial, meaning that Pat and I will get off to Boston once again.

Today, a really brave nurse helped Pat and myself to first sit Pádraig up on the side of the bed, and then stand him up. At the end, it wasn’t clear who was more exhausted, Pádraig or us. But – isn’t it great that we can start doing this with him? Yes, it is “spannend”, but it must also be terribly exciting for Pádraig to be able to “stand” on his own feet again – all be it with three people helping him up!

“I am alive, I can think, and no one has the right to deny me these two realities.” (J.-D. Bauby)

Happy Easter.

This morning, I woke up to a bright, wonderful day. The sky is blue, the air is crisp and clear, and somewhere a bit further away, there are birds singing, greeting the day.

The nurses had decided that I should sleep and that they would turn Pádraig at the usual times, at around midnight and again 4am. It was very kind of them and it felt good to be able to stay in bed when they came in. When I got up once they had left (just in case:) I noticed this smell of smoke in the room and thought, well, maybe it’s just in my imagination. When I asked them at 4am, when they came back in, they said “Osterfeuer” , Easter bonfires. Half asleep I thought “as long as those fires are outside all will be ok”.

This morning, I finished what the Financial Times called “One of the greatest books of the century”, The Diving-Bell and the Butterfly. I was “written” by Jean-Dominique Bauby, editor of Elle magazine, who in 1995 had a stroke and woke up with a locked-in syndrome: he could hear, see and understand everything that was going on around him, but not communicate – except with the blink of one of his eyes: one blink for ‘yes’, two blinks for ‘no’. He wrote the book in Room 119 of the Naval Hospital, Berck-sur-Mer, convalescent home for the disabled, next to the beach.

Jean-Jacques Beineix made a film about Bauby and showed how he used his left eye to go through what he called the “hit parade of letters”, with the most used letters coming first, selecting them one by one: E S A R I N T U L. The director, Julian Schnabel, won the prize for Best Director at the Cannes Film Festival in 2007 for the film.

Bauby also established, in 1996, a year before his death, the Association for Locked-in Syndrome (ALIS): to collect all the present information about the syndrome, to allow sufferers to communicate better with one another, to create means of breaking the solitude and isolation, an to make them true citizens of the 21st century.’

Since last night, Pádraig is on a half-dose of the anti-seizure medication and much more awake. We’ll go on with this until Wednesday, when the antibiotic will be stopped too. He’ll have an x-ray in the morning and ready to go home in the afternoon, hopefully. – We have been here far too long. But I am sure that, in the end, it will be worth it!

Today was the day of the 30km run before the marathon. I managed to finish, just about… Tired and ready to go to sleep.

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.