Pentacost in Lourdes is a huge mass with thousands of people in the underground basilica. Then Kaffeetrinken with the group hosted by the organisation that organised the pilgrimage, followed by a quiet afternoon.

We went with Pádraig to the hotel we’re staying in to show it to him again, to relax a little and to write those all-important postcards.

There’re postcards you can buy here I had completely forgotten about. Like the 3-dimensional ones, or the even more advanced ones where the 3-D picture changes when you move them slightly from the let to the right.

There are many unusual aspects of Lourdes. There are things, people, and events you wouldn’t find anywhere else. There is an atmosphere here that sets off emotions that can move you into any direction and over which you have very little control.

One aspect of Lourdes that made me think a lot is that the “sick” are very much ‘centre stage’. It’s impossible to find the right words to describe what is going on. Like what happened when we were waiting for the huge mass to start this morning. We were ridiculously early, as Germans are, to avoid any panic and to get into a good location, close to the altar and with a good view, especially for the people in wheelchairs. While we were waiting, several people came up and took pictures and videos of us. Some came up to hold Pádraig’s hand. There was a sense of ‘look at the terrible fate these people have to suffer’, and of taking pictures and videos to show this ‘terrible suffering’ to friends and family at home. Where in the world would you find so many really sick people in the one place?

I know they mean well.

But I very much feel uncomfortable as the one for whom people have to feel pity. I also feel the same in relation to Pádraig. Yes, Pádraig’s ‘story’ could make anybody cry just like that. I could (and deep down do) cry all the time if I looked back and pitted him and his ‘lost’ life.

But I don’t, I don’t want to, and I won’t. Because this would most definitely be the end.

I am not the one, and Pádraig is not the one, people look at and feel great themselves because they themselves are healthy and they themselves have a family that is healthy, and because they can feel pity for someone who is trying to live a life, trying hard like no other.

This is not the end. This is the beginning. This is not about pity and lost opportunities and a lost life. This is about hope, about getting up again after a fall, about being proud, about not giving up and not giving in, about help and support and shared energy and love when it is needed most.

It’s about live and living. It’s about inclusion. It’s about ability. It’s about dignity and respect. It’s about defying boundaries and established ‘wisdoms’. It’s about: look at Pádraig and the brilliant things he can do!

It’s about Dreamboaters. It’s about making the world a better place.

(You have to start somewhere:)

It was the day to go to the baths. Last year, we had arranged a ‘special visit’ for Pádraig because we weren’t sure whether he was ready to be dipped into what is, apart from holy, ice-cold water. This year we went with the group in the afternoon – after a visit to the grotto and the group picture in the morning.

We met the same Italian ‘neurólogo’ who had persuaded me last year that all was good and that in case anything did happen that he would be there to assist (with the Irish helper in the bath whispering to me that you always had to watch the Italians:). He remembered Pádraig and shared Pádraig’s story with his fellow-Italian assistants in the bath.

They dipped Pádraig into the ice-cold water on a stretcher and as they did he lifted his head and half of his upper body out of the water! – I wouldn’t call it a miracle, more like a natural reaction of trying to get out of the cold, but he had not done this last year and I had never seen him doing anything like this before. But then, he’s not being dipped into ice-cold water that often…

When we left the bath, the neurólogo clapped me on the shoulder, shook my hand and said: l’anno prossimo! Yes, I said. L’anno prossimo! How much better Pádraig will be next year!

Too late to think, too late to write anything. Too tired. More tomorrow.

On the train to Lourdes, for the third time in as many years, with Pádraig and an incredible group of people, many of whom are friends by now!

We’ve interrupted Pádraig’s rehab programme for a week for this journey. The first one Pádraig undertook just two years ago. He was tube-fed then and we were worried about how he would travel. How things have changed since then!

Good night from northeast France, on the night train.

Listening to John Creedon on RTÉ Radio One playing Mr Bojangles, one of my favourite Bob Dylan songs (though not written by him:), sang by Nina Simone no less. It’s one of these ballads that transport me into a different world. Now he’s playing John Martyn and May you Never

And may you never lay your head down
Without a hand to hold
May you never make your bed out in the cold

Tomorrow, we’ll catch the train to Lourdes from Karlsruhe, just above a 30 minutes’ drive from Pforzheim. It’ll be the third time, Pádraig will be going, the first time he went when he was still in Hamburg. We’re all looking forward to the train journey, to the stay in Lourdes, to meeting old friends and making new ones.

One of the good things here in Pforzheim is that we meet many other families with family members who have been recovering from different levels of brain injury over different periods of time. They come from different parts of Germany, from different background, and can all share different types of experiences.

One really interesting approach to assisted living we heard about today was from a family living in a little village of less than 3,000 people where they have built to houses for ‘Living across the Generations’, a “Generationenhaus”. The idea is that the very old people live with the very young and everybody in between and everybody contributes what they can to each others lives. People can either buy or rent apartments which are all separate but close to each other.

Someone else responded really enthusiastically when I told them about the idea of ‘An Saol on Sea’ in the Bray Head Hotel (still a dream:) saying that you could sell or rent out apartments and even run part of the building as a hotel with a restaurant, supported by the work of people with handicaps, each contributing what they can to the running of the place, feeling proud and fulfilled by getting some ownership back over their lives.

When I said to yet another person how difficult I find it to understand that you need an international expert in severe acquired brain injury to justify the provision of what the HSE and the RCPI call the Wonder Drug, i.e. physical exercise, for sABI survivors – when they are trying so hard to encourage everybody else and when they are really doing their best to convince everybody else of the benefits of this ‘wonder drug’ – that person said: there are studies to show that life expectancy is reduced to maybe 10 years without rehabilitation, and increased by maybe five additional years with just some pulmonary physio. Imagine what you could do for a person’s quality of life with an adequate programme of rehabilitation! Everybody knows this, but not everybody agrees that it is in society’s interest that survivors of sABI survive much longer – apparently, they cost too much money to society. Think about it. The right of a person to live subject to budget.

Article 2 of the European Convention of Human Rights says: “No one shall be deprived of his life intentionally”. Article 3 of the Convention says: “No one shall be subjected to torture or to inhuman or degrading treatment or punishment.” I’d look at the denial of my right to live and the right to receive treatment that allows me to live in dignity and with respect as the ultimate “inhuman or degrading treatment”, even as being intentionally deprived of my right to live. When you are abandoned in a bed there is no other outcome but early and untimely death. Being left in a bed to die when you should and could have your life ahead of you cannot be ethically (nor, I’d say, legally) justified, not even by a lack of ‘value for money’ in a value-free society.

JFK would have been 100 years old today. Pádraig is 27. – There was a little bottle of German ‘champagne’ on his table this morning for breakfast, with 22 karat gold flakes in it – you’d be afraid to drink it because you’d probably never ever pass a metal detector unchallenged. There was also a box of chocolates and a really nice card on behalf of the owners and staff. The therapy room had a huge banner with Happy Birthday and all morning people came in singing him birthday songs, even when he was doing his hour in the Lokomat. There were cards arriving in the post and a never-ending stream of whatsups and text and video messages and phone calls from around the world, literally.

In the afternoon, we went to an electronics shop to buy Pádraig a mobile phone.

It was amazing.

He  knew what he wanted. The size of it. What colour it had to be. The cover it should come in.

We didn’t really have enough time today to connect him via his new phone with his friends, but we managed to get it started and to install Whatsup on it. One step at a time.

Of course, there were the memories of this night four years ago when we saw each other for the last time before the accident happened less than a month later. When we say him arriving at this restaurant, when we had a lovely meal together, when we left and said good-bye outside – him about to leave for Boston and us going to Germany the following day. There was this seagull with little sticks in her mouth about to start to build a new home for her family – and we did not know then that it was seagulls that followed Pádraig from Cape Cod, Hyannis and the hospital, back to Beaumont and Hamburg, all the way.

Then, we’d never had thought, never would’ve imagined that we would be here today, supporting him in his struggle to regain some control over his life – getting him a mobile phone, the first one for him in a long time.

Whether you prefer the CSNY version of Eight Miles High or the almost incomprehensible 10 minute long Byrds version (one comment about that said: “I was kicked off football team in southern Ohio in 1968 for listening to the Byrds…lol…”) or the civilised 3 minute one  – we were way above those eight miles today here in Pforzheim – I know, if you look at the picture below it doesn’t look that high.

I promised myself never to complain about Irish weather ever again! Can’t do much about it anyway, apart from emigrating, and there’re plenty of other reasons wanting you to emigrate (but also to stay:).

Not being either Englishmen or mad dogs, we stayed indoors for most of the day. Even moved down to the therapy rooms from our boiling ‘penthouse’ apartment for a while to give Pádraig a run on the MOTOMed and to do some exercises we don’t get a chance of doing during the day.

I was thinking today that what I am writing about every night has probably changed an awful lot over the years: there were times when I was utterly disoriented, not knowing where I belonged, where we belonged, whether Pádraig was going to survive, when I couldn’t imagine how my life would continue, how we could help Pádraig regaining some control over his life, how to deal with all that sadness.

The feeling of desperation now is probably more about the need to constantly having to explain in Ireland that Pádraig and others like him need help. I mean – the HSE, the government, the professionals KNOW that! And then the need to find funding and to implement a pilot project! Come on guys! – An then there are the daily moments of desperation, they come out of nowhere, just like that…

Germany surprises.

There is the weather – today it’s 31 degrees celsius in Pforzheim and my weather app is telling me that it will get even hotter tomorrow.

Then there is the way they look after people with a severe acquired brain injury. One family who is here with their son told me that this is the level of therapy their son receives per week when they are at home (note that a ‘unit’ is 45 minutes) – I know every injury and every person is different, but their son and Pádraig are not that far apart. The way it works is that their GP prescribes the therapy and their public health insurance pays, with them selecting the therapists. It’s similar to what Pádraig received in Hamburg and what I had passed on to the NRH when they asked me what treatment Pádraig required.

• Physiotherapy: 3 units
• Physio ATG (Atemgymnastik – Breathing): 4 units
• Speech and Language Therapy: 2 units
• Occupational Therapy: 3 units
• TOTAL: 12 units

In Dublin, we couldn’t get the specialists in the NRH’s National Brain Injury Programme to tell us how many hours of therapy Pádraig requires.

I know, we won’t be able to change the weather. But there are things we can change.

We want to achieve a few things while in Pforzheim. We’re working on all of them all the time. Pádraig amongst all of us works the hardest on these goals. Today, we achieved one: Pádraig managed to walk across the room with just me and his physio assisting him!

What a wonderful achievement!

Can’t believe that the first week here in Pforzheimis is over already. Hope Pádraig will continue recovering at the same pace for the rest of our time here. And really proof all of those who wanted to decide over his life wrong.

All the best for the other Irish family here who’ll be leaving tomorrow for Ireland!