Time to say ‘thank you’. Because today’s meeting with the Minister of Health, Simon Harris, T.D., was the result of the hard work and dedication of hundreds of people who, in their own way, have contributed to making the hidden crisis of the abandonment of sABI survivors public. And by making it public, they have contributed to getting the attention of those who are in a position to help us to bring change. The people who have been supporting the idea of An Saol from the very beginning with their very generous donations, their time and their expertise, fabulous beautiful crazy fundraising ideas, their efforts to spread the word amongst their families and friends, to people with ideas and influence. People who are directly affected by sABI, some of whom very sadly lost their loved one and of whom we think tonight especially. Admirably, however, also people who feel so deeply, so strongly, with so much empathy, about the abandonment of the survivors that they make it their ‘case’ to bring about change – even though they are not directly affected. Thank you to all of you, Dreamboaters!

Simon Harris, today, pledged his support to the An Saol Project and to our efforts to advance it. He said that he felt very strongly about it. He commended An Saol for its solid and thorough work in the preparation of the proposal. He and his officials listened to the stories of four families, provided first hand by Catherine, Joe, Terence and myself. There was an immediate agreement that what is happening cannot be allowed to continue.

What will need to be addressed in relation to the An Saol proposal are operational issues which we will start working on, together with the HSE, next week. There will be another meeting with Minister Harris when he will be joined, hopefully, by Junior Minister McGrath in a few weeks time.

I’m back from Dublin, sitting on the train from Frankfurt to Pforzheim with an ETA of midnight. So relieved. Because I nearly missed the flight, then the train, and several connections. It all feels a bit like the Midnight Special.

There are millions of different versions of this song, and even the lyrics vary – with one of the very early versions going like this:

Get up in the mornin’ when ding dong rings,
Look at table — see the same damn thing

…very similar to the Luke Kelly’s ‘auld triangle‘ and the ‘hungry feelin’ (but missing the verse about the female prison:).

When we’ll wake up tomorrow morning, we won’t be seeing the ‘same damn thing’. We’ll be looking at the beginning of a new era, a new life for sABI survivors and their families, of the beginning of a process that will change the hearts and minds of people, including professionals, about sABI.

What we have been told about our loved ones by professionals, how our loved ones and we have been treated at times, seen as wasters of precious and scarce resources in the health sector (because there was no ‘return on investment’), the ‘feed, medicate, hydrate’ maintenance approach – all that will one day soon be a thing of the past.

On that day, we will look back and wonder how on earth the inhumane and degrading treatment of people with sABI and their families was allowed to continue for so long. Why didn’t we shout ‘STOP’ earlier? That day, we will remember today’s meeting, when the Minister of Health heard the story of a 30 year young man ending up in a nursing home. And when he said, softly, ‘he’s my age’.

We’re not there yet, but we can certainly see the sun raising beyond the horizon, at the end of the line for the Midnight Special. We’ll get out of the darkness. Soon. And I’ll be in Pforzheim by midnight:) Hopefully.

 

Some of you, especially the Irish, probably spent this afternoon getting ready for the big match in Croke Park today, the All Ireland Football Final between Dublin and Mayo. If you were in Paris, chances are that you had a brilliant time at the most amazing Kaffeetrinken with the most amazing cakes ahead of that big match.

A really good friend of Pádraig’s organised the first international home-based fundraiser for An Saol in the world’s most romantic city. Look at this – isn’t it absolutely amazing?

To remind us who their fundraising efforts will support, here are a few (‘sample’) stories about people with sABI who contacted me over the past couple of weeks. – If you ever were in any doubt that things have to change….

A young man in his teens with a severe Acquired Brain Injury is about to be sent from an acute hospital to a nursing home – when the family doesn’t want this to happen. Another young man with a brain injury is being looked after by his (single) mother at home – she is getting no help whatsoever. The care and medical decisions of a third young man with a severe acquired brain injury in a nursing home are being made by a doctor who does not share the medical information with the family.

I’ll be meeting the Irish Minister of Health, Simon Harris T.D., tomorrow afternoon with some other family representatives to ask him for his support for An Saol.

What he will decide tomorrow will say a lot about our government and our society.

We know that we’ll always have Paris, though!

Spent a bit of time today talking to our friend in Napa who is organising the welcome party for us at the end of the #GreatAmericanCycle. Looks like we’ll be meeting a group of professional American cyclists in Novato at the Marin Cycle HQ at 12:30 on Saturday, 15 October 2016, to cycle that last 3:30 hours with us to Napa. Could it be any more concrete?

To be honest, it’s so concrete it really scares me.

Now we just need to organise something like that for the start in Hollywood and the bit in the middle will sort itself out.

It’s a bit worrying that we seem to do everything the other way (note I didn’t say the ‘wrong way’) round. But, hey! This was never going to be an ordinary cycle!

If we cycle from Finish to Start, i.e. from South to North (instead from North to South like almost everybody else) – there’s no harm to organise the last leg long before we deal with the first one. Right?

Pádraig had a slow, quiet day today. A lazy morning with a late breakfast. Easy-going lunch. A walk into town. A bit of shopping in C&A (he picked a great looking jumper for himself). It’s the last weekend in Pforzheim. It’s just two weeks ’til I’ll be packing the bags for the #GreatAmericanCycle.

T. S. Eliot once said that “What we call the beginning is often the end. And to make an end is to make a beginning. The end is where we start from.

Time flies, though. Even if, at times, we start things from the end and work our way up to the start. Time just disappears into nothing and is lost forever.

Some afternoons we walk up with Pádraig to this park. When our German friends talk about walks in the afternoon, they say to stay clear of these parks. Not only because they are not well maintained, but because of the people frequenting them. Yet, this is where Pádraig has made friends. The kids from the Middle East who asked him had he died and arisen (nothing unusual in their mind) – causing a huge smile on Pádraig’s face. The woman from around the corner living with her daughter of €40 social welfare a week and €30 worth of plastic bottles she collects (and people leave for her in the park). Getting out of the park on the other side is a bit tricky as there are bars supposed to make it difficult for motorbikes, for example, to get through. Never was there no help offered to navigate Pádraig’s wheelchair around the barriers.

Today we saw where they are living: just beside the park in what planners in Ireland had called ‘modular’ living spaces. Containers stacked upon each other and bolted together.

Pforzheim has taken in more refugees than the whole of Ireland.

Today, as most days, Pat and I practised to ‘walk’ Pádraig across the room. Today was the first day, however, that we managed to do (a bit of) it without direct help by the therapists:)

The Irish Times published two letters to the editor under the headline “Neurological Care in Crisis“. The word ‘crisis’ implies that something is changing for the worse right now, that this was a time of particular difficulty or danger – when what we are all talking about is something that has ben going on for a long time and for some reason is only entering the public domain right now. You might ask, with Supertramp: Crisis? What Crisis?

In about two week’s time, Ill be packing my bags (very small bags) to go on a cycle with two other old lads. I’m trying to be funny about it. But really, it’s pathetic. Most of us, including the Junior Minister in charge of Disability, agree that the An Saol Project should get funded. And we are going on a cycle. To raise €1.5m. We’ll need to cover three year’s of a pilot!

You might have heard the news today that the National Asset Management Agency (NAMA) sold, according to the Irish Comptroller and Auditor General, its Northern Irish portfolio under value and thus lost €200m to the State and the Irish tax payer. – They didn’t say who benefitted.

Looking at these news, our little miserable cycling trip sounds even more pathetic to me.

I’m still working on uploading a video clip showing Pádraig going up the stairs again today. Lots of help again. But the motivation. The effort. The direction. The focus. The satisfaction on his face. The hoorays of the people who helped him.

Hey – who would deny him, and other survivors struggling every day to get better, the help they need to win their struggle?

You?

It sounds bad when someone asks you ‘how did you get on just on your own’ and you say: “Actually, great!” because it almost sounds like you preferred not to have anyone else around you. But that is not true.

I spent a few days with Pádraig on my own (apart from the ‘bootcamp’ activities) and they were really, really busy. But they were really, really nice. No time to do anything else, but that was good too, in a way. It made me think of stuff I usually don’t think about…

If you live in Ireland you probably have heard or Terry Prone. If you get up early in Ireland, you’ve probably heard the ‘Living Word’, something like a ‘thought for the day’ on RTÉ Radio One. Every week, another person shares their thoughts about interesting, important, and spiritual aspects of life.

This week, Terry has been talking about different aspects of the story of the ‘good samaritan’. This morning she talked about the well known idea that, whatever happens, perspective makes all the difference. And that was the case with all the ‘good’ people passing by that injured person on the road – without getting involved. Until the samaritan chose not to pass by, but to get involved. Not because he had a different perspective on what he saw, but because he chose to have a different perspective.

And this was Terry’s really brilliant conclusion and message for the day (and for life): we can choose our perspective on things. We can choose whether we want to continue on our way and not get distracted by what we encounter along the way. Or we can choose to get involved because that is the right thing to do. It’s up to us.

What do you do about all these ordinary-day days? It’s so much easier to celebrate the extra-ordinary, the highlights, the great achievements, the out-of-the-ordinary. To do the same with an ordinary-day day is hard. Worse, it wouldn’t even come to your mind to do so.

Yet, these are the days that count. These are the most difficult days to get through.

Finding the strength, the determination, and the motivation for the every-day day stuff is really hard. Must be the hardest thing Pádraig ever did. For us it’s easy. We just get inspired.

Today, Pat and I walked Pádraig across the room – with some help, advice, and support. But we did it. And we thought this was absolutely brilliant. But the best was still to come.

Following a session in the Lokomat and a (light) lunch, Pádraig had an hour of speech and language therapy (SLT). We thought: lets try how well Pádraig can read. That’s when the really amazing thing happened – something we had tried before, but more on a casual basis. What happened today, caused a bit of enthusiasm with the SLT. (I did point out to her that ‘a bit’ and ‘enthusiasm’ don’t really go well together.) It was an amazing first!

The way it works went like this. She showed Pádraig a card with a word on it.

When he had read the word, he pressed the switch.

The she showed him three cards with different pictures on them. Once he had seen the cards, he pressed the switch.

Then she showed to Pádraig one card after the other again and asked him to press the switch when he saw the picture that matched the word. I wasn’t sure whether he even knew the word ‘Mütze’. He did and when the third card with the ‘Mütze’ came up he pressed the switch.

She repeated the whole exercise with a shoe, a t-shirt, and a chair – and each time Pádraig pressed the switch to match the picture with the word.

We’ll try out some more complicated reading exercises tomorrow. Why has he never read? Imagine Pádraig flicking through web pages, FB pages, music sites… reading the news.

 

I went for a drive today to Frankfurt Airport. At the beginning, it felt like going on holidays. The weather was fantastic. There was just very light traffic. All seemed to be moving into the right direction.

Then, this car appeared on the motorway. Was it the “Mentalist”?

Just a few minutes later, we got into another traffic jam, of Ferraris.

Then we saw the original Jaguar of James Bond ahead of us.

When we got closer to Frankfurt Airport, and I saw this plane attempting to land on the opposite lane of the motorway, I realised that today was far from being a holiday-like day.

 

Back in Pforzheim, all was getting back to normal until we arrived at this Biergarten along the river Enz. It turned out that the day was going to end the way it started. Pure magic. I couldn’t believe my eyes.

And my ears.

 

All in all, it was a really exciting day and a really good weekend. With plenty of visitors, great excursions, excitement, and brilliant, if somehow strange, entertainment.

 

 

When I lived in this really cool ‘Wohngemeinschaft’ in Cologne a few years ago (many, many years ago!) there were certain things you could not admit to. Under no circumstances. There was no grey. Just black and white.

Like not eating in a fast food restaurant.

It was ok to have changing relationships (after all, we were all free, loving people). It was ok to listen to your music really loud (after all, you were just expressing yourself). But you would never. Ever. Eat. In a fast food restaurant.

Pádraig did just that yesterday and he had a great time. Look at him.

He poured down that smoothie in no time. No coughs. No problem whatsoever.

Then something really strange did happen. A young women came over to him and gave him 5 euro.

Imagine – you go into Burger King, buy yourself a smoothie, and someone comes over and gives you a fiver!

Pádraig is keeping the fiver for the woman in the park who is collecting plastic bottles from the bins. She’ll be happy, like he was, when she’ll receive the financial support!