It was all over before we even knew it had started. 10 minutes of our lives just disappeared in a flash but will for all eternity be available in the digital world. It feels and sounds a bit like science fiction. Moments like these are definitely not part of our reality. It’s us watching other people on the telly, usually.

We did this because we thought Pádraig’s story and ours, as well as that of An Saol, could help ending the neglect that survivors of severe acquired brain injury in Ireland are currently suffering.

Will it?

Who knows.

In case you missed our 10 minutes of ‘fame’, and for us to remember how those 10 minutes of our lives suddenly disappeared into the ether – here it is. The first part of “Tonight with Vincent Browne” on TV3 last night.

“Walk on air against your better judgement.”

Tonight we’re getting ready to join Vincent Browne at 11pm on his TV3 show where he usually discusses important matters of the day with important people. Tonight it’ll be Pat and I. You can just imagine that we are that tiny little bit nervous about this whole thing.

We’ve been thinking a bit about what we’ll be saying, what is the important point to bring across. There is the scandal of the abandonment of persons with a severe acquired brain injury (sABI) that needs to be highlighted again and again and again. But, more importantly, we want to highlight the fact that NOW is the time to do something about it. The proposal for the An Saol Pilot Project has been accepted by Minister Harris and by the HSE. It was included in the HSE’s 2017 Service Plan. Why is it taking so long to implement it? What does it say about the HSE that a project that has been approved gets stuck in bureaucracy and doesn’t see the light of day?

We need champions, energetic trail-blazers, Dreamboaters – where are they?

Tonight, we hope to connect with some of these extraordinary people who have the capacity and the willingness to make change happen. To claim the fundamental human rights of those who have been abandoned and neglected by professionals and society – just because they have a severe acquired brain injury.

Together we will change the hearts and minds of people.

Together we will make life worth living. For everyone.

It’s the best part of four years that Pádraig was in the National Aquatic Centre (NAC) the last time. It’s a pool where serious swimmers spend a lot of their time, either training or competing. It’s where he became a champion. It’s where we spent lots of weekends on time keeping, watching, shouting, sweating, and really really hoping Pádraig and his sisters would get a new personal best, a PB.

One of Pádraig’s sisters has been playing water polo for a while and today we went to see her team playing. I didn’t quite know what to expect and how it would feel for us all to be back there with Pádraig.

And you know what? He really liked it. It was a bit hot up in the viewing area (always has been;), perfect on an otherwise miserable, windy and wet Sunday afternoon.

The most amazing thing is that he is back in pool once a week and really enjoying it.

What is hard to believe is that this is possible only and exclusively because of the hep of his ‘old’ coaches (and a bit of our own efforts). That this is not something that was offered to him as part of his rehab…

I wouldn’t know what that is, “Khao Soi Ghai”, if someone hadn’t introduced me to Camile, the Ireland-based Thai ‘healthy’ take-away chain, and if Pádraig hadn’t decided yesterday that this is what he wanted to have for his name’s day, his ‘Namenstag’.

His first take-away dinner in a bit more than 3 1/2 years.

Thai. Spicy. Tasty. Noodles with chicken in a creamy satay curry sauce and Asian greens.

The portions are well-sized. And he finished it all. Every single noodle, All of the chicken. Everything. He must have really liked it and thought that this was such a welcome difference compared to the pretty conservative cooking we do at home.

Lives little, and sometimes not so little, pleasures. Food.

We will be continuing with our Saturday meetings this Saturday

Something really interesting, not to say amazing, happened today – almost like a textbook lesson on severe acquired brain injury.

Someone working with Pádraig had been using his switch to allow him to communicate with them. Last week, they had used the switch to spell relatively long, relatively complex words. There was quite a bit of excitement about how well Pádraig was doing.

Today, though, it looked like as if Pádraig wasn’t ‘able’ to use the switch as consistently and reliably as last week. It looked like as if he didn’t manage to concentrate or, maybe, had physical problems coordinating his foot movements to press the switch when he was expected to do so.

Until…

Well, until the person decided ‘to get to the bottom’ of the ‘problem’. It turned out that there wasn’t really a problem at all – at least not the one expected.

Through a series of very detailed and targeted, double-checked questions (and answers!) they established that there was no physical problem at all. Pádraig told us very clearly and unequivocally, that at times he just doesn’t feel like answering. We didn’t have the time today to fully explore those reasons in detail but they seem to be similar to the ones you and I would have: not feeling like as if we wanted to have a conversation or to answer questions, when someone other than ourselves decided, for not always obvious reasons, that we should answer what at times sounded like pretty arbitrary questions… if you know what I mean.

To be honest – I wasn’t *that* surprised, but for the person working with Pádraig it was a revelation, I think, that he was fully there – not just able to complete ‘tests’ but to decide what it was that he wants to do and what he is interested in.

In my mind, the experience of that hour today should be written down, included in a textbook, and be used to teach persons working with survivors of severe acquired brain injury (sABI) as an illustration that they are dealing with real people, with interests, opinions, moods, feelings, quirks – all those aspects of a personality we would expect generally, but find difficult to accept when we are dealing with non-verbal persons affected by an sABI.

This day, two years ago, I was leaving Hamburg, driving towards the Autobahn to visit my mother when I received a call to say that she had passed away. She must be watching over us and, especially, ‘her’ Pádraig!

Tonight Pádraig went to a gathering of postgrads in Dublin City University (DCU) who had organised their monthly meeting around the Irish language. The talked about the politics of language, the use of it, and language technologies. One of the speakers, Siobhán Seoighe, came over to say ‘hello’, they had worked together on Irish language issues.

Pádraig really enjoyed that session. Even more when one of his sisters was calling on the phone and became really interested in the topics of the session, being a little annoyed that she hadn’t made it.

We promised ourselves and him that we’ll do this kind of thing more regularly. Nothing like a bit of stimulation of the mind!

Earlier today, Catherine talked to Joe Duffy on Ireland’s most popular phone-in show about the terrible brain injury her son David suffered while on holidays in Crete, her plans to bring him to Germany for early neuro rehab, and the An Saol Foundation.

Back home, I visited our neighbours to one side. A man, older than myself (!), who decided to get his wife out of a nursing home because he considered it not to be good enough for her. I admire him so much for what he is doing for his wife. I’ve never heard of anyone doing anything like it.

We then invited neighbours to the other side over to try a bit of the Galician ham and cheese I had brought back from Santiago. It’s their last night in their house they have lived in for many decades. It was a lovely night with good conversations and great company.

Life without good neighbours who look out for each other just would not be the same.

I was so happy to be back, to see Pádraig and the rest of the family again. And I think they were, each of them in their own way, happy to see me too:)

One thing I thought when I was away was that there really is no need to worry or to complain. Whatever worries us, whatever we need to complain about, we should just eliminate from our lives. And live the way that is best for us and our loved ones. We’ll never ever convince those who don’t get the Dreamboat.

 

Cycled to Santiago today, up some quite incredible hills that will require someone to pull and another one to push Pádraig’s wheelchair. Also encountered some pretty hard to navigate part through a forest – especially as it now looks as if we were not going to have a centre-front wheel available for his wheelchair. I have asked different people over several weeks (months?) and the best answer I got was: these wheelchairs were not made for cross-country walks, and people in these wheelchairs were not supposed to walk cross-country.

Apart from that long and at times pretty challenging cycle, today was a really nice day, with just a few clouds and nice sunshine in the afternoon (after a wet and windy start in the morning).

I checked out a Casa Rural, they are right on the trail and do have a wheelchair accessible room, as well as a big, old, two star hotel, also with wheelchair accessible rooms. They are in a small town, with a town square, a taxi station (and there is one wheelchair accessible taxi there driven by Ramón), and, above all, one of these fabulous ‘restaurantes de menu’ where you can get a full three course lunch with red wine and coffee for €9. I was ready to call home to say we’d all move to Spain!

In Santiago, I checked in to the Seminario Menor, less than a kilometre from the cathedral, single room for €15, with free internet, a fabulous view of the city and a real feel of days gone by. (Just found out the catch: there’s a German couple in the room right beside mine and the walls were made for seminarians, not German couples in their twenties. I’m trying Spotify, ‘Cinematic Chill-Out’, without earphones… If this doesn’t work, I’ll switch over to the Spanish top 100 and turn the volume up – though Germans a slow in getting subtle hinds.)

Checked with the Pilgrim’s Reception Office, the ‘Oficina de Acollida ao Peregrino’, how this thing with what they still call the ‘Camino Inglés’ (and we will rename the ‘Camino Irlandés:), and got a funny reaction.

Firstly they said: “Oh – better walk from El Ferrol, not from A Coruña” and “the only reason that walkers of the A Coruña section now receive the Compostela is because of the mayor of A Coruña who wants to bring business into his city”. So what about the 25 km we will have to walk in our own country? “Well, you just collect stamps, at least two stamps per day in your own country, preferably from a church but restaurants and hotels will also do, and we’ll recognise this.” As easy as that.

Then I went to mass and got to see, for the first time in my life, the famous giant thurible or censer in Santiago de Compostela’s cathedral.

First, they get it going.

And then it flies across the full length of the side-wings of the Cathedral.

Quite dramatic, isn’t it?

When I was in the church, all of a sudden, the ‘walls’ came down. You might know the feeling, it’s something like almost complete relaxation, no guards. And when the tension disappeared, I just managed to hold myself together. It was like an emotional watershed.

In a bit more than a month, we’ll be in that cathedral together. We’ll get to the end of the Camino we started together years ago walking up from the South, from Salamanca. This time coming from a different direction, literally.

 

It was supposed to rain this morning and didn’t. It was gorgeous. Having managed to sort out my mobile internet access eventually, I managed to find the Iglesia de Santiago – although several nice people I had asked had told me very politely that yes, they knew that church and that it was in Santiago de Compostela…

From the church of St. James (in A Coruña!) I followed Google maps. Maybe I was looking in the wrong places, but there were none of the yellow arrows, usually marking the Camino, anywhere to be seen.

The sun was to shine this afternoon but didn’t. Instead, it poured down as if there was no tomorrow.

I just made it to the first albergue on the way, the Albergue de Sergude. It’s a brand new hostel, €6 a night and I am entirely on my own. Unbelievable. I didn’t count on being in a place with no bed linen, no towels, no food, no drink, no cups, plates, or cutlery, but, hey, that’s life. So I went down the road, walking!, to the next bar, shop, estanco, all in one. As I opened the door the lady behind the counter said, with a broad smile, oh buenas, ¿peregrino? I smiled back at her and asked how did she know? Once my eyes had got used to the dim light in the place, I knew.

One of the octogenarians told me that last time some peregrinos came into the bar he saved their lives by translating for them – they were saying ‘milk’, ‘milk’, ‘milk’, pointing at the small children walking with them, but the poor woman behind the bar didn’t speak any German, English or French. So, menos mal, the man was able to come to their rescue!

He was a bit disappointed when I managed to speak to the lady of the house myself who offered ‘callos con alubias’ for dinner – I won’t translate that for you. Let’s just say it’s a very traditional dish, especially great on cold days like today.

Just before I left, the lady asked me would I come for breakfast – she’d be there from eight in the morning. I said I would.

Just in case you haven’t been around here, it’s is a bit like Leitrim in Galicia. One of those places where all conversation stops for a few seconds when a stranger comes into the bar, only to continue apparently just where it stopped, ignoring the alien in their midst as best as they can.

While I was getting wet on the hills of Galicia, Pádraig was practising the camino at home beside the sea, in glorious sunshine. Not sure whether it was supposed to rain or not in Dublin today – whatever was supposed to happen… the sun was shining from a blue sky!

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I suppose by the end of April, weather here will have improved as well!

The truth is that all the daily hustle, all the heartbreaking and annoying things, all the scandals, all the murders, all the filled-up-to-the-rim septic tanks, the secret underground passages, all the neglect, all the bad things will disappear when we’ll get here in a bit more than a month. It’ll be the real life, far away from the narrow-minded, hurtful, self-righteous, never changing.

Who, who would have thought that we would ever even dream of walking the Camino ever again? Dreamboaters!

PS: Did I mention that you’re supposed to bring not just your own towels, but your own sleeping bag or blankets as they’re not supplied here? 🙂