8th Saturday Social Gathering – An Saol Café

We will be continuing with our Saturday meetings this Saturday

Share your experiences with others!
Gather strength and courage!
Flavour life, literally!

The An Saol Foundation’s 8th Saturday Social Gathering
of survivors of severe Acquired Brain Injury (sABI), their families and friends

An Saol Café

Everybody welcome!

Saturday, 25 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!
www.ansaol.ie
Reinhard.Schaler@ansaol.ie
For enquiries: 087 – 6736414 (Reinhard)

Staring

Imagine that: internationally more than 40%, and in Ireland (really, not so surprisingly) more than 60% (!) of survivors with a severe acquired brain injury are wrongly diagnosed as not being conscious.

Close your eyes for a second and put yourself into that space: lying in bed, “staring at the ceiling”, wondering why on earth people around are ignoring you. Completely. Talking to you in the third person. Never directing a word to you. A consultant saying that any therapy on you would be wasted.

This is, in the real life of Pádraig and many others like him, what is happening.
Every day.

What we want to make happen with the An Saol Foundation is to make sure that no-one will ever be left in that position: “staring at the ceiling”, wondering what is going on…

What we want is what Lionel Richie so absolutely brilliantly captured in his dazzling Motown song and video “Dancing on the Ceiling“.

Can you feel the fun and the energy?

Turning things upside down!

Looking at the world from a completely different perspective!

No more staring at the ceiling – we’ll be dancing on it!

Join us. Make it happen. Now.

 

Impact

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.”

Vincent

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.

NAC

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…

KhaoSoiGhai

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.

7th Saturday Social Gathering

We will be continuing with our Saturday meetings this Saturday

Share your experiences with others!
Gather strength and courage!
Flavour life, literally!

The An Saol Foundation’s 7th Saturday Social Gathering
of survivors of severe Acquired Brain Injury (sABI), their families and friends

An Saol Café

Everybody welcome!

Saturday, 18 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!
www.ansaol.ie
Reinhard.Schaler@ansaol.ie
For enquiries: 087 – 6736414 (Reinhard)

TextBook

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!

Gaeilge

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.

Neighbours

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.