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? 🙂

The great Carol Moran sent me off this morning to Santiago and on to A Coruña from where I will try to figure out how Pádraig and us will walk the Camino (22-29 April).

Arrived in A Coruña, staying in a great Hostal, double room, single use, €24 per night. A far cry from Dublin prices. I got a bus down into town and wasn’t quite sure where to get off. As the bus also went through tons of one-way streets, I also didn’t know where I would get the bus back. In the end, I just stayed on it and did a one-hour bus no. 5 tour out to the famous Hercules light house and back to the train station and my hostal. Pulpo for dinner – Pádraig would have really enjoyed this – and getting ready for the morning.

It’ll be raining tomorrow, everybody says. I also can’t get my mobile wifi to work without which I’ll be pretty lost – unless I can trust the Camino sign posts? It’ll be a fun day.

I probably should be excited. In truth, I feel pretty lost and purposeless. Tomorrow will  be another, better, more purposeful day!

We will continue with our regular Saturday social meetings this Saturday
Share your experiences with others!
Gather strength and courage!
Flavour life, literally!

The An Saol Foundation’s 6th Saturday Social Gathering
of survivors of severe Acquired Brain Injury (sABI), their families and friends

An Saol Café

Everybody welcome!

Saturday, 11 March 2017
2pm – 5pm

Odin’s Wood HSE Day Care Centre
Kildonan Road
Finglas West
Dublin 11
Eircode: D11 H526

Enjoy an afternoon with great tea/coffee
Bring a cake, a game or an instrument
Bring yourself, friends and family
Please help us to spread the word!
http://www.ansaol.ie
Reinhard.Schaler@ansaol.ie
For enquiries: 087 – 6736414 (Reinhard)

One of those nights when there is much to be said but I just don’t find the energy to do it. Just one thing: I spent the afternoon looking at a possible location for Teach An Saol, the An Saol House.

It’ll take a bit to find out whether it will work out, but if it does, it’ll be more than a dream come true.

In the meantime, Pádraig is continuing to improve, enjoying the good weather and being able to get out again.

And I realised that I’ll be going to Santiago on Saturday to scout out the ‘camino inglés’ from A Coruña to Santiago, the 75km way we’ll be walking with Pádraig starting on 22 April.

Dreamtime – time to dream.

PS: Today, we were told that damage done by carers (or PAs) will have to covered by us. Any tradesman needs insurance to cover damage they might do – is there a reason care agencies don’t?

If you bought flowers for your girl friend or wife today, you’re in the company of men who come in to help Pádraig. But, women’s day, believe me, is not a day for flowers. Must be one of these intercultural things.

I visited a family today I had not met before. Their son was very badly injured about six years ago, suffered a severe brain injury, and is now living in a care centre, a nursing home. They are neither Irish nationals nor EU nationals and are having an even harder time then us and the other families I’ve met to access the right support, even to find their way around the Irish system. Being a kind of a refugee is one thing, being one with a brain injury is another! And it would be so easy to help them…

In more uplifting news: early this afternoon, I called Prof Joseph Fins of Cornell Medical School and author of “Rights come to Mind” – the most amazing book about severe acquired brain injury I’ve seen, ever. Prof. Fins had sent an email last night saying he’d be very happy to talk to me over the phone, about Pádraig specifically and the way persons with severe acquired brain injury are being treated (or: not being treated).

It was the most uplifting and inspiring, confidence and energy infusing half an hour conversation I’ve had in a very long time.

After that conversation I thought: we are really going to change the world.

We’re thinking big here (while fixing the ‘small’ every day problems in the process).

What a brilliant swimming session it was today! Pádraig was really at his best. Kicking his legs and beginning to paddle with his arms. But, best of all, he stood up, supporting his body almost exclusively himself and holding his head up high with just a tiny little bit of support by myself. And himself? – He had a big big smile on his face really enjoying the whole experience. It was really good.

This morning, the second Brain Week event organised by the Neurological Alliance Ireland (NAI) and the Irish Brain Council (IBC) took place in Trinity College Dublin with a focus on: “Brain Research in Ireland: Investing in all our futures”. There were three sessions covered by ‘the usual suspects’, including Prof Orla Hardiman (Professor of Neurology, Trinity College Dublin). This was an event focusing on research. The funny thing was that I had echoes of my ‘day job’ as a researcher and project leader / participant in my ear the whole morning: synergy; user involvement; industrial relevance; big data; und so weiter und so fort… et cetera pp.

There was one funny video about taking prescription drugs that was really entertaining and lightened up the morning:

The talks were, as research talks are, far removed from my reality. For example: “Why Ireland needs to reflect the model of a National Institute for Health Research”, or: “Understanding the brain in health and disease: the crucial role of basic neuroscience”, or “Health Information Policy to Support Research and Innovation”.

Well done, both the NAI and the Brain Council for having organised a half-day conference and for completely ‘selling’ it out – all (free) tickets for the event were gone long before it eventually took place this morning.

But, to be honest, I need to see changes now. And I need to see something concrete to happen. The researchers talking this morning, to me, were living on a different planet and moving in a different time capsule.

What about doing the obvious – making what we have all known and have been aware of for a long time real: take those sABI survivors confined to nursing homes, those on “nutrition, medication, and hydration”, and get them a life worth living, in the midst of their families and friends, with the support they deserve, right now!