Trying to catch up. Always behind. Never on top. i close my eye. I hear noises. I hear voices. I feel that I am somewhere but am not. That I should be doing something. That the space where I am is not where I am.

Dublin is his city. This is his home.

Having read Philip’s book and seen that Bladerunner is one of his favourite films I watched parts of it again. The replicants live 4 years and are afraid of dying. So they are trying out everything they can to prolong their lives. I don’t remember how the film ends.

We wonder whether Pádraig might have a cold. How can you tell? How can he? Tell.

Pádraig is now also getting OT a few hours a week. The therapist has lots of experience and already seems to have established the beginnings of a connection with Pádraig. She is amazed that Pádraig never had the kind of therapy she is offering him. So are we. And so, I am sure, is Pádraig!

Full day tomorrow. Working my way down a long list.

We are on the Dreamboat and Dreamboaters do not give up.

Today was the big day of the Women’s Mini Marathon in Dublin. When I arrived at around mid-day in Dublin (not for the mini-marathon;) I thought I might have got off at the wrong stop. It felt and looked like Reykjavík on Christmas Eve: dark, wet, cold and windy. But, there were two brave women, old friends, i.e. friends from way back, of Pádraig who braved the elements and ran the mini-marathon for Paddy, as they know him.

Look at the pictures: they look (just a little) exhausted, but absolutely happy.

Before…

.. and after: in great spirits.

And here is what they said when they finished their challenge:

We would certainly not give up. Paddy is an inspiration to both of us…. We were completely humbled by your care for Paddy and your conviction that he will get well. We are on the dreamboat and deamboaters do not give up. We hope to make another trip to Hamburg. No date set as yet but will check will you before we book. Patricia/Mary(dreamboaters)

Pádraig was tired today, probably still recovering from this Wahnsinns-Pilgrimage to Lourdes. But he is in good form. That we will be going again doesn’t seem to be a question anymore.

A friend sent a book by Simon Fitzmaurice, It’s not yet dark, in which he shares what it is like when someone tells you that you will have just another three to four years to live. When motor neurone disease (mnd) slowly shuts your body down.

I read the book today when traveling from Hamburg to Dublin and could not put it aside. There is one section where he quotes two eminent and well-know consultants he had approached for help and advice when he eventually could breathe only with the help of a ventilator. One, he names him in the book, told him that he had to switch off the ventilator. The other, he names her in the book too, said that they do not advocate ventilation in this country for mnd patients. That it was time for Simon to make the hard choice. (One of them is the same senior consultant who told us and the nation on RTÉ’s Late Debate that people with severe brain injury offer a bad ‘return on investment’.)

I had to read this passage a few times to make sure I had understood it correctly. To my horror, I had: Both consultants advised Simon that he should not use a ventilator but get ready to die. In Ireland, mnd patients are not routinely ventilated – it’s too expensive. Instead, they are sedated, counselled, eased into death. They are not given a choice, Simon writes. Why would you want to live with mnd? In the same way: why would you waste money to help people with severe acquired brain injuries, to slightly rephrase what a senior consultant said about treating Pádraig and other persons like him? Why would you give them proper care, preventing dropped feet, preventing their shoulders being dislocated, preventing bed sores, preventing muscle spasticity, ….?

In the same way that the broadcaster standing in for Joe Duffy the day after my interview with Joe, asked Brendan Flynn whether he thought that his son Robert, who suffered very severe brain injury some years ago, had a life worth living because he had been reduced to a person that was completely dependent on others. Whether he was happy that Robert had survived, whether he was happy to have Robert around. I had to re-wind, listen again to that part of the programme, to make sure I had not misunderstood.

Simon’s answer in his book to all these questions is the same as the one given by ‘mostly dead’ Wesley in The Princess Bride, when replying to Miracle Max’s question: ‘ What’s so important? What you got here that’s worth living?’ – ‘Truuue love’ is his response.

Simon outlived the predicted three to four years, he lived with his ventilator to father two twins, he saw them being born, becoming toddlers.

My response to this ‘return on investment’ in medicine talk, to this inability to grasp even a hint of the meaning of life, to the cold accountant’s mentality in medicine – would be a loud “Ahoi” to wake up the broadcaster, to wake up the politicians, to wake up the consultants, to wake up the people so that they’d see the insanity and so that they joined in singing the ‘Dreamboat’.

Dreamboaters, ahoi!

Still not back to ‘normal’, still not on top of things. Still on that train.

Another of our new friends from that journey rang today. It’s a lady who can only move in a wheelchair and lives in a home from where she dials the numbers on her phone using a stick in her mouth when she wants to talk to some of her friends. She rang to say how much she had enjoyed the journey and especially Pádraig’s company, and how much he had inspired her.

I listened back to Joe and the interview on Lifeline of last week. It was quite incredible when one of Joe’s researchers rang me when we were on that train somewhere in the South of Germany, and when Joe then rang a couple of hours later when we were about to cross into Switzerland, talking about Pádraig, and, in one of his moments of sheer brilliance, talked to Pádraig directly.

Pádraig and I listened back to the programme together today, as Joe had suggested, to the podcast on RTÉ’s website, and Pádraig got visibly involved. It was the first time that someone on the radio talked, not about him, but to him, directly, as a friend, speaking for so many people in Ireland who have Pádraig in their thoughts and in their prayers.

We also listened to the podcast of Lifeline from the following day when Brendan, Robert’s father who had also suffered a brain injury some years ago, was talking about his son and their fight to secure treatment for him. When Brendan described what Robert was capable of doing, moving his right foot and his left foot and so on, Pádraig was mirroring Robert’s movements as if to say: that sounds like myself!

Still tired and exhausted.

Still confused. Yesterday’s birthday was like no other. Between sadness and absolute bliss to have Pádraig around, with us, in our apartment, just having completed the beginning of an incredible journey. How will we look back at yesterday in a year’s time?

Today we went to IRMA, a fair taking place in Hamburg with all sorts of rehab articles, from cars, to lifters, to wheelchairs, to therapy dogs. It wasn’t big, but because of that we managed to see everything that was there, although we only had an afternoon. It’s like learning how to live a new life, every detail of it. Pádraig came with us and we managed to try and check out a few things, like getting more tips on how to adjust  his wheelchair.

Several people on the train back from Lourdes told me that Joe wanted to talk to me. I found him in the kitchen compartment where he spent a lot of time during this long journey because there were always people. It never got boring there. So I sat down beside him and we started with some small talk. Until he asked me whether he could tell me something. Whether he could be straight and honest. Could he tell me something even if it would hurt me. Because he felt that I needed to know.

Go ahead, Joe, I said, of course, tell me what I need to know. Even if it hurts, it’s better to know.

You know, he said then, you know, Pádraig’s life will be so much harder then mine has ever been. And that is because he got to know the other life. He knows what it is like not to be sick, what it is like to be independent. And you need to know this. I don’t want to hurt you. But you need to know.

Joe was born with several syndromes and has been in a wheelchair all his life. He cannot walk and cannot use his hands. He lives in an institution and works 8 hours a day in a “Werkstatt”. He coughs a lot and at times I found it difficult to understand what he was saying. He drinks through a straw from a glass you hold up to him. His secret is that he likes beer and “Kümmerling”. He drinks that through a straw too, he says. In your life you could not find a kinder person.

I am still thinking about how important it was for Joe to tell me what he told me. Asking several people to find me and get me to sit beside him for what he very well know would most likely move me to tears. There was he in his wheelchair, pretty helpless from the day he was born, thinking about this young man he had met for the first time on this journey, who had lived a ‘normal’ life for 23 years, had been able to do, more or less, what he wanted to do, to live his life the way he wanted to live it. And now was wheelchair bound, starting up a new life, knowing and remembering what ‘the life of others’ was like. And he felt that this must be so much harder and so much more difficult. And that I should know.

Joe also told me that, eventually, Pádraig needed to find his own life, among his own people.

Joe was right. What he was telling me was hard. But, as Joe hasn’t given up, Pádraig hasn’t either. Nor have we. And we won’t, ever. Pádraig will live his new life, with the help and love of his family and friends, getting better every day. As he does, he will sailing down the stream with the other dreamboaters.

Singing — Dancing — Crying — Laughing

Traveling by car for nearly three hours, going on a 28-hour train journey, sleeping on a 1.8m long bench in the train, traveling on a train for 28 hours, staying in his wheelchair for 8 hours, getting up at six o’clock in the morning and going to bed at 9pm, having lunch and dinner with 50 other people, many in wheelchairs, being out for hours on end, going on a bus on an excursion to the Pyrénées, joining 10s of thousands of people in processions, sitting in the first row of two-hour long masses, sleeping through the night while being looked after by people other than us, having a big shower-bath, having a bit of a beer, … – and the list goes on with things none of us knew Pádraig was capable of doing. But, of course, he was.

In a way, these were all miracles: things that are really not part of what we perceive as being possible. But they all happened within just one week. Sure, if you’re a dreamboater…

But there is even more.

What Pádraig managed to do over the past week inspired dozens of people who were in Lourdes with him. From the doctors to the helpers to the other sick people, they all said how they admired Pádraig for managing to go this journey.

Two of the people who spent most of their time looking after Pádragi got in touch today by phone and email to wish Pádraig a Happy Birthday. Pádraig’s carer here in Hamburg brought homemade Iscream, and many of his family and friends sent lovely presents and birthday greetings!

Lit two of the many candles: one for Pádraig, one for his friends and family.

Walking along the Gave river

The luxury train cabin: the bed

The long train to Lourdes

At Pádraig’s last birthday he could not even leave his room. Imagine, just imagine what he’ll be doing next year!

Breithlá shona duit, Pádraig!

I still haven’t quite grasped what happened over the past week and how it happened. Fact is that Pádraig made it: an incredible journey over a thousand kilometres on way in a car, on a train, and in a bus.

Tonight, back in Hamburg, I am so tired that I’ll have to stop writing to prevent my head hitting the keyboard.

Tonight, 25 years ago, we were getting ready to go to the Coombe Hospital.

Tomorrow will be Padraig’s birthday. The first to have him back with us…

it’s all a bit unreal – but it’s late after a long 26 hours on the train.

We’re sitting on the train, again. We’ll be crossing the land of the TGV at a speed that will prevent us from driving even in front of freight trains. But that won’t matter. It’ll give us plenty of time to look back at a most extraordinary week.

The main square in Lourdes Holy District during a procession of lights

Several Chaises resting against a wall.

Tourist bus with special entry for wheelchair users

Pretty nifty how all those chairs fit into the travel bus

Politically incorrect angel about to kill the devil in a shop in Lourdes

I am writing now, much earlier in the day than usual, because here at the station my internet stick seems to work. During the past week, not only was time to write at very short supply, not only was I often so tired in the evenings that my brain just shot down at a certain stage, it was also almost impossible to get a reasonable connection to the web. Actually, this place and the people here were so different from anything I had experienced before anywhere else that trying to put into words what has been going on was and will be very different.

If you’re not used to ‘holy places’ Lourdes is very strong in many different ways.

I’ll think about it during the trip back a bit more, let impressions settle a little, and reflect on how this visit changed my outlook on life – because it certainly did.

In the meantime, and just before the train is going to depart, I’ll leave you with some pictures (see above). We’ll arrive in Diepholz at 16:30 tomorrow afternoon, will get the Doblo and drive back to Hamburg. We should be there before the 0 o’clock news:)

(I’ll also look at the comments from previous days and respond. The playlist for Pádraig is still growing and I will start preparing the CD next week.

AND – if all goes according to plan, building work on Pádraig’s extension will commence just after the Monday Bank Holiday.

Leaving for the Accueil where Pádraig is at 5:45 is one of the nicest moments of the day: it’s quiet, there are hardly any people on the streets. Waking Pádraig up and getting him ready for the day with the help of some of the nicest people you could imagine, is also great because its’s slow and easy going.

Today, there was a special mass on with what the Germans call “Krankensalbung”, or the anointing of the sick. It brought it back home to me that, really, al fin y al cabo, people are people and whether they are sick or healthy or strong, they all deserve our respect.

I am sitting on our bed in the hotel and am almost falling off each time my eyes close and my body is about to fall to the ground. Sleeping just a few hours every night is not fun.

Today was our last full day in Lourdes and it has been an incredible experience for many different reasons.

The internet still doesn’t work properly and I cannot concentrate. Time to call it a day and get ready to get up in 4 1/2 hours. More with a bit of time and better connections.

I took a few nice pictures today but haven’t managed yet to connect the phone to the internet or to send them buy different means to my laptop. So this will be a picture-less blog entry …

Someone told me a story about the pilgrimages to Lourdes. Apparently, there are two big ones: one by the gypsies, the other by soldiers. Both are attended by tens of thousands of people.

At the international soldiers’ pilgrimage, tens of thousands of soldiers from around they world ‘occupy’ Lourdes. Traditionally, they swap their shirts, uniforms, hats, shoulder pieces until it is impossible to say which country they came from by just looking at their uniforms.

When I heard that story I thought: what would happen if a war broke out? I’d say they wouldn’t fight. No more fights.

Pádraig this morning went onto a trip into the Pyrennaes, in a specially adapted bus with a lift, to visit an eight hundred year old church and. We had a picnic and arrived back in Lourdes exhausted. There are so many different, brilliant things that happened here in Lourdes, every day, so far.

I find it hard to keep my eyes open, so’ll I finish here., good fudge…

First a bit of news from back home: the cake sale this morning was an absolute hit. The effort that Marie Butler McNally had put in to prepare it together with her family and friends really paid off. It was unbelievable. There are no words that can express sour gratitude, just to say that we will make sure every cent will go into helping and caring for Pádraig. Thank you Marie and everybody who helped to make this coffee morning an absolute success!

This morning, I want up to the Grotto at around 5:45am thinking that it would be deserted and quick. Far from it. Loads of people apparently had got up erning ss

So I bought and lit up two candles: the first of the candles for Pádraig and the second one for all the people who had helped him during the most difficult times in his lives.

I scath a chéile a mhaireann na daoine.
(People live in each other’s shadows.)

Today was our third day in Lourdes, well the second full day, let’s say. This morning, we went to mass in the huge underground Basilica of St Pio X with a capacity of 25,000 people. Today being Pentecost Sunday, the church was packed. Mass was celebrated by about 100 priests. Patrick and I were sitting close to the front and could follow what was happening on the altar pretty good. But the most beautiful thing did not happen in front but just behind us. Have a look at the picture. I scath a chéile a mhaireann na daoine.

Mass was truly multilingual. In fact, it was the most multilingual events I had ever been to.

In the afternoon, Pádraig got a bath/shower. A rare occasion since his accident. With a few really great helpers, we put him onto a stretcher and positioned the two onto a bath tub. Everything was going extremely well, especially given the circumstances – until someone noticed “Schaum” (bubbles) disappearing underneath the bathroom door and into the corridor. When he checked, he just about managed to save some people from drownings – such was the water flow to the outside. He had to spend the next hour cleaning the corridors and getting rid of the water from the corridors. For Pádraig it was absolutely great. I could see how he was enjoying it! Fair play to the great “Maltese” who were making this possible!

To finish up some good news: Usually it’s a 06hs10 h early morning wake up call for Pádraig (with me getting ready at 5h30 and walking over to his accommodation). Today we heard that because there will be a bus tour into the Pyréneees tomorrow, wake up time will be later tomorrow than usual: instead of 06:10h, it will be at 06:20… Looks like I’ll have a lie in…