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~ Acquired Brain Injury (ABI): from the acute hospital to early rehabilitation – more on: www.CaringforPadraig.org and www.ansaol.ie

Hospi-Tales

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Pillar

08 Tuesday Mar 2016

Posted by ReinhardSchaler in Uncategorized

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Up went Nelson, the pillar on Dublin’s O’Connell street, today 50 years ago.

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A little time later, the army installed another explosive device and, this time legally and controlled, blew up what had been left by the first bomb. Doing much more damage to the buildings in the neighbourhood than the original bomb had done.

Few, if any, regretted that the pillar, a symbol of British occupation, had gone. In fact, there was public support for getting rid of it, there are people saying today they had thought about blowing it up themselves.

Tomorrow, I’ll be going out with Pádraig at 2.30 – anyone free to come with us (I need some help to drive with Pádraig)?

We might make it down to O’Connell Street and have a look at where the pillar once stood.

What had been built for eternity vanished from the face of the Earth. In a few seconds.

Crocker

07 Monday Mar 2016

Posted by ReinhardSchaler in Uncategorized

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It’s more difficult to get out than to stay in. Only that ‘life’ happens outside.

This morning, we needed to ‘negotiate’ with a brick layer to get out of the house — our side entrance is being widened a bit to make room for Pádraig’s wheelchair.

We went to Croke Park to attend a ceremony in which an Irish flag was given to every post primary school in Ireland, as part of the 1916 (Easter Rising) celebrations. (This year, Ireland is celebrating 100 years of the declaration of the Irish Republic.)

It must have been the coldest morning on record. And the wheelchair spot in Croke Park must be the windiest and coldest spot in the whole of this magnificent 80,000 seater stadium.

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Notwithstanding the cold, it was brilliant morning. We saw the President arriving with a motorcade of what looked like two dozen motorbikes. He gave a great speech about the vision the signatories of the proclamation had for the Republic they declared that Easter Sunday. And how much of this vision still remains to be realised.

Ryan Tubridy, one of Ireland’s best know broadcasters was leading us through the different parts of the ceremony. Seo Linn and the army band were playing. The national anthem was played. An actor explained what the ‘inventor’ of the flag Thomas Francis Meagher had in mind when he came up with the idea of the tricolour.

It was a brilliant day. For Pádraig and myself the first event we attended as part of the 1916 celebrations. – And tonight, we watched it all again on the telly.

On the way back up Clonliffe Road, crossing Drumcondra Road, and walking up St Alphonsus Road, I was thinking that everybody who doesn’t know Pádraig yet will get to know him around here. We will be out and about. How brilliant is that?

PS: Any ‘volunteer’ for the outing on Wednesday afternoon, at around 2.30, for about 2 hours?

Space (for miracles)

06 Sunday Mar 2016

Posted by ReinhardSchaler in Uncategorized

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I can’t say much about Mothers’ Day. It would all be speculation, guess work. I can just imagine that there is so much pain and so much joy there all at the same time. For all sorts of different reasons.

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There was no smell of toast, coffee, and a (very burnt) fry coming out of the kitchen today in our house. Just the memory of it. The thing is that not just us but also our children are getting older.

Pádraig had a relaxed day today. Late breakfast. Late lunch. A walk in the park. In between banana milk, a spoon full of honey (for good health), steak, potatoes and broccoli. No strenuous exercises, no tilt table, not MOTOMed.

“There are miracles waiting to happen” is a saying I like.

While talking to someone in LA today who is rapidly becoming a good friend, we realised that miracles, extraordinary things, need space and opportunity to happen and to make a difference. This is what what I am looking for and will build, with the help of our friends, for Pádraig and other persons like him. An Saol will provide space and opportunity for brains to re-learn guided by the best ‘teachers’.

Montana

05 Saturday Mar 2016

Posted by ReinhardSchaler in Uncategorized

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Madrid is full of boys named Paco, which is the diminutive of the name Francisco, and there is a Madrid joke about a father who came to Madrid and inserted an advertisement in the personal columns of El Liberal which said: PACO MEET ME AT HOTEL MONTANA NOON TUESDAY ALL IS FORGIVEN PAPA and how a squadron of Guardia Civil had to be called out to disperse the eight hundred young men who answered the advertisement.

This is the beginning of Hemingway’s short story , The Capital of the World.

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The priest at tonight’s Novena in Gardiner Street Church told this story when he was interpreting the story of the prodigal son in St. Luke’s gospel. I suppose the idea is that we are all Pacos. We all have done something wrong in our lives and we all want our father to forgive us.

I was trying to calculate when I first went to the Novena in Gardiner Street. I think it was in 1987. It was 29 years ago. With Pat and her sister. Then, when our children were born, we brought them along. It was always so packed that there were people working in the Church telling us where we could stand.

There is a Novena of Grace prayer that is said each of the nine days, and it contains the lines:

I also ask you to obtain the favour I ask in this novena.
(Here pause to ask the favour you seek.)
But if what I ask is not for the greater glory of God, or the good of my soul,
obtain for me what is most conducive to both. Amen.

Each year I went, I prayed for the people in our family who needed it most, I thought. Never in my wildest dreams had I ever thought that one day, we would be bringing in Pádraig, in a wheelchair, and be praying for him.

1.5m

04 Friday Mar 2016

Posted by ReinhardSchaler in Uncategorized

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Give bikes 1.5m.

Because this is a safe distance to pass a bicycle.

images2Give An Saol 1.5m.

Because this is the amount (by pure co-incidence) that we need to start a 3-year pilot project demonstrating how advances in neuro rehabilitation research can inform neurological rehabilitation leading to a successful recovery following severe Acquired Brain Injury (sABI).

(Anyone out there who could take this idea and design a brilliant campaign logo?)

I have shared the (draft) plan for the project with some experts, abroad and in Ireland, and with you here on the blog. I have also shared them with the HSE.

We’ll finalise the plan over the next week and launch the project in May.

In preparation of the launch, we will raise awareness with survivors and their families, politicians, practitioners, researchers, the administration, and voluntary organisations.

Teach An Saol – Life and Living with a severe Acquired Brain Injury (sABI) will become a reality. It will bring long-term neuro rehabilitation to people who take a long time to recover.

And we will raise the funding necessary to bring life and dignity to young people one way or the other. There is no alternative.

Pádraig continues to cycle the MOTOMed by himself. He’s half an hour on the tilt table every day. (To the best of my knowledge, the famous standing bed, while approved several times, has still not even been ordered.)

He and others in his position need An Saol (and the Dreamboaters:) to give their life a perspective, fun, hard work, company, hope, love.

PS: Yesterday, one of his carers asked whether he could hear. Not understand. Hear. What does that tell you?

Mass

03 Thursday Mar 2016

Posted by ReinhardSchaler in Uncategorized

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Last night, we went to Cora’s ‘removal’ – something that doesn’t exist in Germany. Pádraig ‘told’ us that he wanted to go. It’s when the body of a person is brought from where it was (home, hospital) to the church. There was a short service and we met a lot of old friends, among them Cora’s husband Peter. To Cora and Peter, Pádraig had been like a son. For many years, Cora had minded Pádraig (he was Patrick then; he hadn’t changed his name yet:), like her own son. Even when Patrick had become Pádraig, all grown up, she came over to our house, especially Christmas. Every year, Santa got into real trouble because he had such a hard time matching Cora’s generosity.

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This morning, I walked with Pádraig to Cora’s requiem mass. Again, he had ‘told’ us that he wanted to go. And it was so good that we went. Both the priest in his homily and a family friend who talked about Cora’s life with Peter mentioned Pádraig and the role he played in their lives a number of times. This was not child minding. This was family and love. They were so happy that Pádraig had come to Cora’s funeral mass.

The church all these services took place in is known locally as the ‘wigwam’. It’s the church Pat and I got married in. It’s the church that Pat’s mother had gone to the evening of the big storm that blew her over when she was leaving the church after mass – a blow she never recovered from. It’s part of our life and family ‘history’.

The removal last night and the mass this morning made me stop in my tracks. It stripped my life, our life, down to its essence. While I probably have my own ‘version’ of faith, I always recognise it in the readings and, often, in sermons and teachings.

At the centre of it all is love. It’s that simple.

Whatever worries we have, whatever seems to be important to us, whatever decisions worry us, whatever possessions make us tick, whatever mess we think dominates our life — none of that really matters. At the end of the day, it’s all about the people we love. Nothing else.

Cora gave me a glimpse of what that love means, how this love affects those who are loved.

Tomas Ó Criomhthain ended An t-Oileánach (The Islandman), his book about the wild Blasket Islands out off the west coast of Ireland and his last inhabitants, by saying:

I have written minutely of much that we did, for it was my wish that somewhere there should be a memorial of it all, and I have done my best to set down the character of the people about me so that some record of us might live after us, for the like of us will never be again.

The like of Cora will never be again.

But the world keeps turning and there are many young people with such big hearts and such an amount of energy, commitment, and love that there is no reason to worry about our future. It’ll just be different.

Cora Roche

02 Wednesday Mar 2016

Posted by ReinhardSchaler in Uncategorized

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Very sadly missed by Pádraig, indeed, and all of us.

 

 

Seomra na Gaeilge

01 Tuesday Mar 2016

Posted by ReinhardSchaler in Uncategorized

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Tonight, three of Pádraig’s lecturers from TCD came to visit and they brought this with them for him to keep for the night and to be returned to TCD tomorrow.

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I had never seen this. I have never been in this room, Seomra na Gaeilge, that he had worked for so much – though I’ve seen signposts on TCD campus pointing towards it. How proud he was when this room was opened. How proud I am to see this big picture that hangs on the walls of that room he had pushed for so hard.

Other things happened today. Nothing that would compare to this.

No more whinging

29 Monday Feb 2016

Posted by ReinhardSchaler in Uncategorized

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The movie about persons with ABI arrived, in German, but without the subtitles. They arrived in a separate MS Word file which I’ll have to somehow mix into the movie. Nothing easier than this for an experienced localisation veteran, you might say! (Don’t worry if this doesn’t mean anything to you. It’s absolutely and utterly boring.) Instead of relying on my own veteran experience though, I asked a good friend what to do next and we are on the way of solving the problem. Some time, in the not too distant future, we’ll organise a BIG view of “Wärst Du lieber tot?” – maybe even with the Director herself. How knows.

I also heard from the Dominican Sisters who I had asked about space for An Saol’s therapy centre. They are considering the request. The letter they sent was incredibly moving and christian. Of course, ‘christian’, you might say, they are, after all, a catholic order. But for me, it went far beyond what someone in a certain position and from a certain background would be expected to say. – Turns out, and I don’t think the writer of the letter knew this, everybody in our house, except myself, was educated by the Dominicans at some stage in their lives. Our kids in Scoil Mobhi, Pat and her sister in Eccles Street. For me, the letter had echoes of Scoil Mobhi, which was the school I would have liked to go to myself, had I had the chance (I didn’t;). In addition to the encouragement, compassion, and verbal support they expressed, they sent a cheque for 5,000 Euro for An Saol, to cover the cost of some equipment or therapies.

It was the expression of trust and encouragement in An Saol and the work we are doing that moved me most and will most motivate me over the coming months.

Here is the commitment: according to my plans (how good they are I’m sure I’ll soon be told by an expert), it’ll cost 1.5m Euro to fund the 3-year An Saol Neuro-Therapy pilot project for (ideally) 3-5 survivors. With your help, this is the money we’ll raise, (ideally) with the help of the Irish State.

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As Enda Kenny, our outgoing Taoiseach, said: no more whinging, we know what we need to do.

Right?

Elephant

28 Sunday Feb 2016

Posted by ReinhardSchaler in Uncategorized

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Today Pádraig went to hospital – BUT, for the first time, not to be treated; instead he came with us to visit someone close to us. Going to a hospital isn’t something you’d like to do. And while this wasn’t a happy occasion either, it was nice to meet family we hadn’t seen for some time.

The film ‘Would you rather be dead?’ (Wärst Du lieber tot?) arrived – only that I couldn’t find the English subtitles. Maybe I’m making a mistake when I’m trying to play it, but I will be in touch with the production company tomorrow to find out. We need to get this with English subtitles. It’s such a powerful film.

It’s calling by name the elephant in the room.

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Asking the most difficult of questions. And getting the answers from those affected: No. Not dead. I want to live. – Once we get the right subtitled version working, we’ll find a cinema or a big hall and organise a big big showing.

There are so many things pending that really need to be ‘fixed’: like the space for the An Saol Sara Walsh Therapy Centre, sufficient staff, a better presence on the internet, clear and unequivocal political support, HSE support, fundraising, …

We’ll tackle them, one by one, starting tomorrow!

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