It’s almost midnight and I’m listening to Tears in Heaven by Mr Slowhand Eric Clapton. Should be asleep and resting. Or dancing in Saturday night fever. To say that life is upside down and slightly disorienting is no news. Though every so often I think it’s going beyond my threshold. Just before it does, there is a twist that avoids the fall.

Tomorrow some friends of Pádraig and myself will meet up to see if we can come up with a few ideas about he first of the two US Fund- and Awareness Raising cycles, the one on the Cape. There are a few friends around Boston and the Cape who have already expressed an interest to help out, raising the profile of the cycle. And there are a few people who said they might come along. – Last time Pat and I were on the Cape, the Chief of Police and the Town Administrator both said they were enthusiastic cyclists, maybe they will join the cycle too? I would like to put a marker on the spot of the accident to highlight how dangerous this stretch of the road is for cyclists.

This is the first weekend we have carers in the house. They give the days structure, and I’m not sure how much structure I want during the weekend. Pádraig is getting back to ‘normal’, eating really well and even drinking. I think I mentioned our milkman is back delivering milk and cream to our house, as he has been doing since the kids were born. I think Pat once mentioned that his father delivered the milk with a horse and cart. Anyways – today I made myself a big mug of banana milk. For some ‘stupid’ reason I thought, let’s see if Pádraig likes this. Less than five minutes later he had finished the whole huge mug of my (!) banana milk. I thought that if he keeps going like this he soon won’t need the PEG anymore.

In Ireland: Legal Alien
You know the 1987 song about the Englishman in New York (by Sting) with the line “I’m an alien, I’m a legal alien in New York”. Well, I’m a legal Alien in Ireland. And, unlike Sting, I have an Alien ID Card to proof it. It was issued by the Irish authorities when I first arrived in Ireland in the eighties and decided to go ligit. Luckily, I did not hand in my passport with my application, unlike a German friend of mine who never saw it again. – Nobody thought that any of this was in any way strange:)

The end of a long week, with Pádraig’s PA’s starting (there’s about half a dozen of them), more meetings, a visit to St. Vincent’s Hospital to get his PEG changed (thankfully just a day visit), and visits by various therapists today: a dietitian, and three physios. And not only that, Pádraig got appointments for the next two weeks, once a week. It’s pretty low frequency, but it was a really good surprise to hear that he will have a weekly visit by the community physios. The other good news was that his standing bed has been approved (by the third HSE fund approached:), and a MOTOMed will arrive here on 11 February, without an arm trainer initially, but we’ll be working on this:) Turns out that Dublin North (!) is a bit more advanced on the dietitian front than Dublin South (!), no longer using the ‘old’ thickener for drinks and food which changed the colour of the drink (especially water) and also changed consistency in a relatively short period of time (especially with hot/warm drinks).

Overall a fairly intense, very very busy, but moving in the right direction, with some pleasant surprises.

In case you were wondering – while Pádraig got a Euro Million lotto ticket from one of his relatives, he is, very unfortunately, *not* the Irish winner of this week’s jackpot. If you know the winner out there, ask him/her to get in touch!!!

Tonight will have to be a short one.

Just to say that Pádraig got a new PEG, smaller and neater than the old one that was 2 1/2 years old. We spent the day in St Vincents Hospital in Dublin today, but the absolutely brilliant news is that he did not have to stay there. He is back home, has a sore throat from the endoscopy. When everything was done, we even got some spare parts  – for some case and time in the future.

If your ship doesn’t come in swim out to it, a guy called Jonathan Winters once said. He clearly hadn’t heard about the Dreamboat. No need to swim out to it. It’ll carry you wherever you want to go. With lots of the best company. It’s this company, it’s the belief that your belief can carry you wherever you want to go. That there are no limit. Physics doesn’t come in. Medicine ain’t working on this journey. Preconceptions neither. The view goes way beyond the horizon, further than you ever thought was possible.

I believe that soon there will be more survivors of severe Acquired Brain Injury (sABI) living at home, with better support, with the right equipment, and adequate therapies. As long as that is possible. And when it is not possible, there will be a safe, homely and respectful place for them where they will feel welcome and where they will be able to live in dignity.

There will be a movement that will reclaim the human rights of those from whom these rights have been taken because their life and their humanity are not respected.

More meetings today and more meetings planned for the week. I am sure we will all get tired of meetings one day and normality will return:) Thought there was one meeting today we didn’t attend but where it was decided that Pádraig’s standing bed will be financed by the HSE. The last hurdle to take on that one is that an Irish supplier  will have to order it from the German company so that support and maintenance in Ireland will be guaranteed. Fingers crossed.

Pádraig’s and his PAs are getting on really well. It’ll take a few weeks and routine will have settled in. It’s hard to imagine at times, but it’s definitely getting there. Which is good.

It’ll be another day in hospital tomorrow for Pádraig for a PEG replacement. But hopefully, it’ll just be a quick ‘in and out’.

In Ireland: That’s interesting
Something you just said, something you are wearing, something you had cooked for your guests. Well – it’s most likely *not really* “interesting”, it’s odd, it’s ugly, it’s inappropriate, it tastes horrible — but no-one in Ireland would even dream of telling you this, people would just drop you a hint, not by telling you something is boring, but the opposite. Interesting, isn’t it? Certainly takes a while to get used to it when you would expect straight forward opinions:)

Some days just work out. Today did.

An Saol’s 2016 Pledge campaign is gaining momentum and quite dramatic reactions from some stakeholders who do not see this as an opportunity to really make an impact together — to provide a life and living environment  for survivors of a severe brain injury. The number of TD’s, Senators, and MEPs signing the pledge is growing by the day. Things are beginning to move!

Pádraig is getting on well with his PAs and it seems they are ok with him too. He hasn’t met them all (apart from that well-attended training day), but if the first couple of days are an indication, it’ll all be good. There’s still a bit of getting used to each other and getting used to the circumstances and getting used to the routine (routine? which routine?), but that’ll come.

We’re still not clear about the equipment recommended but not financed. But that will be resolved one way or the other too some time soon.

I got a phone call from my supporters in the Little Sport Bike Shop in Fairview to attend an urgent meeting (yes, another one:), with a rep. Only that this time it was the rep of a Californian bicycle manufacturer, Marin (as in Marin County). They are going to sponsor me for the two cycles in the US, Boston to Brewster (in June) and Hollywood to Napa (originally planned for around Eastern, but postponed to the autumn because my companion fell ill and won’t be able to get fit in time for Eastern). They are going to provide a first class brand new road bike along with all the equipment needed. Under one condition: that’ll I’ll raffle the bike after the cycles and pass the proceeds on to An Saol. — To be honest: I should have come up with this brilliant idea myself but then – I didn’t know they were going to supply the bike!

The best thing today, however, was Pádraig showing us, after we had asked him to do this, a ‘thumbs up’ first with his right, then with his left hand, and then proceeding to operate the switch with different fingers of both hands. Movement and control are coming back to his fingers. He is continues getting better and inspiring us. These are all small steps but so significant! And he keeps trying as hard as he possibly can. He won’t ever give up. And neither will we.

In Ireland: Big Problem Solving in no Time
From a distance, the world looks blues and green. From a distance, there is harmony. That’s probably the way Ireland, and especially the North, was looking to me. In the mid-eighties, when I arrived in Dublin, my parents thought I was moving into a war zone. People were bombing and killing each other. In my new job in a large multi-national, I talked to everybody who wanted to talk to me about religion, the North, and abortion. It was all perfectly clear how all this could be resolve — until one of my colleagues told me that I didn’t have a clue what I was talking about. That made me shut up. For a while.

German Music Tip
Otto Waalkes sings one of Germany’s best ever songs, Männer by Herbert Grönemeyer, but not about Männer (men) but “Hexen” (witches). Really, really well done.

I’ll have to keep it short. it’s almost midnight and it was a long day. It’ll be a short night.

One thing struck me today. And that is how good and caring people are. Today it was the unlikely combination of the milkman and the nurse, both showing such incredible concern and support for Pádraig when I didn’t really expect it. They hear and listen and understand with their hearts. They don’t have a system or procedures behind which to hide or which they would blame for things that are wrong.

It was also the carers who spent their first day with Pádraig. Down to earth, wanting to help and to do a good job. They all got on really well.

Finally, An Saol’s pledge campaign is really gaining momentum and is being supported by a growing number of members of the Oireachtas across all parties and the independents! Will send out a reminder tomorrow to those who haven’t responded.

I’ve started to write tonight’s blog half a dozen times.

I know what I want to say but I don’t know how. I don’t want to misrepresent anything. I don’t want to ignore all the efforts made by so many people. I don’t want to accuse anybody of anything.

But I have been thinking about this all weekend.

Four months ago, Pádraig arrived with a list of equipment for which he had been assessed, a care plan, and a therapy plan. He was then assessed again, in a hospital, by other experts, and an application was put together.

It turns out they could have saved themselves the effort. What Pádraig is going to get does not depend on what he requires (as assessed by the experts) but by the budget available.

I know this sounds controversial, is not politically correct, and will most likely offend someone reading this – but: to me it looks like as if the HSE could save themselves a lot of money doing assessments and just get the accountants to decide what what treatment one should get.

I went to Lidl to beat the crowd. And there it was.

The TV Simulator has arrived in Ireland!

Get one and you won’t ever be afraid of a break in when you’re out because this gadget will make the burglars believe you’re in watching the Late Late or Ray d’Arcy.

Pádraig got a really really lovely present today. Maria brought it in: a hand knit blanket , so nice, so exactly the right size, it must have taken weeks to make this. In ‘rojo y negro’ (the colours of our favourite hangout in Salamanca:).

We had a meeting with builders this morning to get the outstanding items resolved. There’s so little left to bring this project over the line! And it looks now that we’ll do this over the next week or so. And as soon as the weather will get a bit better, Pádraig’s sensory garden will be prepared.

I’ve been thinking about the last 16-17 weeks. It’a all still a bit too close for comfort what happened. A bit raw. But I think, in years to come, these weeks will turn into folklore. In their very own way, they were epic. A real manifestation of what our health system and, to an extend, our country is about. We’ll look back and mark the day the first ever standing bed arrived in Ireland. (That day hasn’t come yet, but soon will!)

We’ll look back and wonder how on Earth this country could ever have allowed it’s children with a severe acquired brain injury to be kept, or “maintained”, under intolerable conditions. Where they were hydrated, sedated, and nourished — and not much more. Because the limited resources of the health system could not be ‘wasted’ on them. When we’ll look at this kind of treatment of the most vulnerable of our brothers in the same way as we look now at child abuse that, in the past, was apparently perfectly acceptable.

Got two phone calls from Germany today, from fellow Lourdes pilgrims who both were wondering how Pádraig was getting on. One is aiming for her 60th pilgrim train – she’s done 57 already. 57! The other is in charge of the carers and got in touch to see whether I thought that her son who is currently studying in an Irish secondary school could help with Irish pilgrims. We can’t wait to meet our dear friends again who took Pádraig and us on the most wonder-ful, miraculous journey ever.

In Ireland: The Room
When I moved, many years ago, from one university job to another, bringing along some sizeable EU projects, I needed to find office space for researchers. I went filled in a form, sent it off and waited. Then I rang, Later, I emailed, and rang someone else. I talked to one of my colleagues in desperation, exhausted, loosing hope of ever getting anywhwere — when he asked: “why didn’t you tell me earlier? I know Sean. He’s in charge of the rooms, is about to retire, and he owes me one.” Next day, I had the room.

German Music Tip
Otto Waalkes, Am Arsch vorbei, Otto acts Udo ‘singing’ Udo’s original “Wenn Du durchhängst” using the story of Hänsel und Gretel — you wonder which version is better:)

People are talking about fighting battles with the health system to get appropriate treatment and care. Or they are talking about ‘taking on’ the health system. — When that system is supposed to be there to help them. Which experiences got them to the point where they felt that this ‘system’ was not their alley but their foe? When the world turned upside down on them?

I’ve still not fully understood what it means for Pádraig that he has such a good eyesight. Some of his great friends who came for a visit last night were thinking of a few cool computer games. I was thinking of reading:)

He is also getting better at the spelling and finds great pleasure especially in longer words. He enjoys the challenge.

We have had a great reaction to the pledge and have signatures from more than a dozen members of parliament in Ireland and the EU. We’ll follow up on the responses and will send out a reminder to those who haven’t replied yet. Please get in touch with your TD’s and ask them to sign the pledge.

We will prepare some question ‘cards’ you can use when the election candidates will be knocking on your door.

Another visit by HSE therapists today, as well as our GP, everybody getting ready to support Pádraig’s stay at home home. We are learning more about the HSE works and the several funding sources that exist for the one person within the same organisation. In a situation like this, quite a bit of time is spent establishing which funding source is going to pay for which service or equipment. Each funding source requires a justification for the funding, reports and quotations — material that doesn’t always seem to be passed on between all these offices and funding sources.

It’s also interesting to see that the experts in the NRH (part of the HSE) recommend equipment which will then not be supplied by the another HSE division because of budget restrictions. The request is then referred to a third division who will need a meeting, request reports, and have an assessment on whether they will be able to entertain the request. Today, I was seriously thinking about organising a fundraiser for the HSE. In the country with one of the highest growth rates in the world. No funding for basic, recommended, and badly needed equipment. – Kaum zu glauben!

In Ireland: The roofer
Someone in the family, many many years ago, wanted to get their roof fixed. I had just arrived in Ireland and was pretty clear about how you do this: you get quotes in, you compare them, and you take the best available. Then I learned that this is (was?) really tricky in Ireland. Because you had the roofer you’re always dealing with. And because you couldn’t possibly be asking him for a price. Because if you did, you’d just imply that you didn’t trust him — otherwise you wouldn’t ask him about the price. So me, being German and new in the country, ignorant of all of these issues, was sent out to ask for the price….

German Music Tip
Nina Hagen & Udo Lindenberg, VOPO live concert from Berlin’s Tempodrom in 1989. VOPO stands for Volkspolizist, the people’s police of the former GDR. And this performance is pretty unusual.

We were afraid to find out. But we have always been wondering.

Today, two and a half years after his accident, Pádraig had his first formal eye test which confirmed that he has 20/20 vision on both eyes.

Nobody had ever bothered to do this eye test. Maybe because they though ‘what does it matter?’

Today, we also learned that the NRH does have an orthoptist (like an eye therapist) but no ophthalmologist (eye doctor). The same way it does not have a neurologist.

We had been wondering whether we could ever be happy again after the accident happened. Today we are over the moon!

Is féidir linn!