Today, Pádraig dropped the ball, literally.

Please look a bit more serious – after all, you are living with a disability!

We used to but now do it far too seldom: check out and work with Pádraig’s hand movements.  So Pat came up with this brilliant exercise, which let’s Pádraig hold a ball until she asked him to drop it. What I’m taking away from this is that ‘dropping the ball’ is not half as bad as the experts are sometimes trying to tell you.

Pádraig was great today. There is no doubt in my mind that soon, he’ll be able to say things we’ll understand. He can say  a very clear ‘aaaaa”, when we ask him to say it.

We’re in Tating tonight because we’ll be visiting a place about an hour’s drive away from here, were people with injuries like Padraig’s live, and receive support and therapy.

Tonight, I’m still tired – too tired to write anything more consistent or coherent. So – good night to you, I’ll talk to you a little longer tomorrow evening!

I thought I had loads of time. Then a phone call. Next, I had to look for the number to pin onto – where’s the t-shirt? The runners? Shorts? Ok, let’s skip breakfast to safe some time (not a good idea!) and check out the bicycle. Both tyres: pretty flat. I know where I had left the pump, but someone had moved it. Eventually, I had all my stuff ready and left the house to cycle up to the Phoenix Park, with just 30 minutes to go until the start of the half marathon.

When I got into the park and started to cycle like Eddy Merckx (remember him?) up the very long main road towards the starting line I thought – I’m late. The race had kicked off without me. There were literally hundreds of people running down that road, and it is a long long road. Only – they were running in the wrong direction, I noticed. Which is when I had this deep moment of relief.

All of these people, hundreds, were not yet in the race at all. They were running to get to the starting line on time! Instantly, I felt back at home. This was not Germany where people turn up 10 minutes before a scheduled appointment. This was Ireland, where people arrive ‘just in time’. We all did, the cyclists and the runners, all made it on time to the starting line.

My ‘wave’ started at about 10 past 10, so I had plenty of time to get ready.

If you ask me how it was: well, I arrived, I finished. It was an exercise of endurance, not giving up, keep going – even if I felt at times I had more than enough. I mustn’t have looked very good when I crossed the finishing line, because several different helpers asked me whether I was ok. Didn’t meet Donal. Hope he did ok. – Just a month to go until the big day, the Dublin City Marathon. (I’ll have my gear and the bike ready for that!)

In the afternoon, I talked to Pádraig on the phone. This is something new, not all 100% clear yet, but there is no doubt that he is really trying very hard to talk. Today, I could even hear him on the phone trying to say a few words. He needs to re-learn how to make sounds deliberately and how to form different sounds. But the fact that he very obviously is trying to do this, to make sounds, to speak, by itself is a major breakthrough.

It’s still warm in Hamburg and sunny, which is great because Pádraig can go out onto the rooftop and get some fresh air, hear some different sounds, feel the wind in his hair and on his skin, and get a bit of sunshine (in the shade).

It’ll be another 5am start tomorrow. Can’t wait to see Pádraig again, but it was also great to be back in Ireland, in Dublin, and with Pádraig’s sisters.

It’s going to be the rehearsal for the big day in about a month’s time. And I really hope it’s not going to rain tomorrow as it did today. I hope it’s going to be a nice, smooth ‘run’ throughout the Phoenix Park and surrounds tomorrow.

The idea was to get there well-rested. Go to bed early. – Instead, it has been a very long day and it hasn’t finished yet! Something amazing happened this morning.

I drove up to Galway for an 8 o’clock meeting in a large software company who are interested in some of the work I’m doing. (Really, since when do people start working in Ireland at 8 o’clock?) To my surprise, the conference table was packed, about a dozen people in the room, and another half a dozen people joining via video conference. The meeting went well – until we thought it would be nice to do what the European Commission calls a ‘tour d’table’ to get a brief introduction to the people who had joined the meeting.

It turned out that one of the participants had taught Pádraig Irish in the Conradh na Gaeilge and had followed, as he told me at the end of the meeting when I went over to talk to him, his journey from Cape Cod to Hamburg.

Pádraig spent close to two hours today on the roof terrace in glorious sunshine (though staying in the shade). He is starting to eat again, slowly and little, after the break of last week following the bleed in his arm. He had a few quiet therapy sessions today, enough to bring some distraction, but relaxed and not too exhausting.

We are making good progress with An Saol and we are getting a much better understanding of what it will offer and how it will be financed. What will be decided sometime soon is whether it will be a new, stand-alone initiative, or whether we will team up with one of the existing organisations. Once we have a decision on that, we can go full steam ahead with the implementation of our plans for An Saol.

Life’s not a rehearsal, it’s happening as you live it, it’s An Saol.

Time to have some dinner and go to bed:) – Good night!

Oh – Hospi-tales made it into the Finalist list in two categories and into the best blog post of the Irish Blog Awards. Who would have thought…!?

Oh, oh – just in case you feel like reading about how bicycle accidents involving cars are dealt with in the USA, check out this article from yesterday’s New York Times to which a very good friend in Boston sent me a link.

On the 30th of March 2007, Ireland signed the United Nations’ “Convention on the Rights of Persons with Disabilities“, the day it was opened for signature. The UN says that “There were 82 signatories to the Convention, 44 signatories to the Optional Protocol, and 1 ratification of the Convention. This is the highest number of signatories in history to a UN Convention on its opening day. It is the first comprehensive human rights treaty of the 21st century and is the first human rights convention to be open for signature by regional integration organisations.” It highlights that “The Convention was negotiated during eight sessions of an Ad Hoc Committee of the General Assembly from 2002 to 2006, making it  the fastest negotiated human rights treaty.”

The UN affirms that the convention “(It) takes to a new height the movement from viewing persons with disabilities as “objects”  of charity, medical treatment and social protection towards viewing persons with disabilities as “subjects” with rights, who are capable of claiming those rights and making decisions for their lives based on their free and informed consent as well as being active members of society.”

It is really worth reading this Convention, of which Ireland is a signatory, – and compare its content with the way that the Irish Government and Health Services treat persons with disabilities.

In its Preamble under (c), the Convention states that it reaffirms “… the universality, indivisibility, interdependence and interrelatedness of all human rights and fundamental freedoms and the need for persons with disabilities to be guaranteed their full enjoyment without discrimination”. There are many, many and more detailed sections where the Convention clarifies how this is supposed to be done. One section I find to be of particular significance is the one where the signing parties recognise under (m) in the preamble

“(…) the valued existing and potential contributions made by persons with disabilities to the overall well-being and diversity of their communities, and that the promotion of the full enjoyment by persons with disabilities of their human rights and fundamental freedoms and of full participation by persons with disabilities will result in their enhanced sense of belonging and in significant advances in the human, social and economic development of society and the eradication of poverty.”

and, under (v) recognise that

“the importance of accessibility to the physical, social, economic and cultural environment, to health and education and to information and communication, in enabling persons with disabilities to fully enjoy all human rights and fundamental freedoms.”

Here are my questions:

How can a Government sign this Convention and at the same time deny its citizens adequate and timely access to neuro rehabilitation services? How can it allow its Health Officials to deny persons with very severe acquired brain injuries their dignity and universal human rights by talking about them as offering a “bad return on investment”? How can a Government stand by when persons with severe brain injuries are injured a second time when they are in hospitals – where these injuries are caused by inadequate facilities and care? And there are many more questions like these that could be asked.

As the UN says, persons with disabilities are not the objects of our charity, they are subjects with rights whose physical integrity, independence, and contribution to society have to be protected and recognised.

How many people do you know who have contributed as much to change, to the life of their families and friends, to their school, their university, public debate and to society in general as Pádraig – while he has been in a state of minimal conscience, very gradually and very slowly starting again to eat, move, and communicate? – Is this being recognised and valued by the health service, the government, the administration – as postulated by the Convention?

Pádraig today had another double session on the tilt table early in the morning. While I was on the way to Dublin, Pat joined the session and said that it is truly wonderful to see how the physio therapists worked with Pádraig. When she returned later in the afternoon, the alarm was ringing. When she checked, a bit in a panic hoping it wasn’t anything too serious, she realised that Pádraig was so fast asleep that his pulse had gone below 60 – which is when the alarms go off. The morning session had truly exhausted him and sent him into a deep recovery sleep. Notwithstanding, Pat managed to get him into his wheelchair with the help of a nurse, and out into the warm late summer sunshine on the roof garden, high up over Hamburg!

I’ll have an early start tomorrow morning, back on the road again, first to Galway, then to Limerick. Looking forward to the half marathon on Saturday.

Don’t forget to support Donal Earls who will be running his first ever half marathon for Pádraig on Saturday!

Pat met a lady in Dublin she knew because her son had been to the same primary school as Pádraig. She told her that she had been at a car boot sale in Fairview where a girl was selling ‘schnickschnack’, showing a picture of Pádraig, planning to pass on the proceeds of her earnings from that day to him. – Sounds complicated? That’s because it is, but then again – it isn’t.

There is one thing we have learned over the past year and a bit, and that is that the generosity, the compassion, and the solidarity of the friends of Pádraig doesn’t end, it’s  infinitive.

I fear that if I read about this, I’d think “how pathetic”. But I can tell you, this is as real as it gets.

If you listen to the news, if you *still* listen to the news and hear politicians worrying about the OECD recommendations to make corporations pay tax; if you hear politicians calling for tax cuts for the high earners; if you thing about us returning a humongeous debt to German and French pension funds, with a high interest rate, because greedy bankers and builders couldn’t get enough; if you see the never-ending cuts in the health service that is no longer fit for purpose – your blood boils and you know that there is nothing you can do about it – other than helping your friends and ignoring politics and politicians. You look after the people you know. And in the process, you create an energy, a power, a dynamic that mainstream politics could only (and will always) dream about.

Padraig today had another visitor from Dublin, sharing with him a bit of what is going on at home. Bringing a bit of Dublin to this hospital that has been his base, not his home, for the past 10 months. 10 months.

He is getting better and recovering from the haematoma. The pain in his arm is obviously going down and he seems to be more relaxed.

Today’s German Music Tip
Reggaedemmi – Freiheit (2014)
What’s hot
Friendship
What’s cold
Bureaucracy
The German word/phrase/verse of the day
Hau rein!

I want you to take sides. I want you to decide how you would do this. It’s about a story my mother told me and it’s one of those stories that got stuck in my head. It’s about onions.

Some of you will know that my sister married this really ‘different’ man. For more than 25 years, they ran a restaurant on stilts high above the North Sea, until they died within a couple of years of each other, now more than 14 years ago.

The year they started to run the restaurant, my mother went up to the North Sea to help in the kitchen. She was a reasonably good cook and she knew how to prepare ‘Kartoffelsalat’, potato salad, a staple diet of Germans, especially Germans from the North of the country. (Funny, in a way, that although there are so many ways to eat potatoes in Ireland, potato salad never really caught on.)

One day, there was a bit of a panic in the morning because the cook was late. He had been out the previous night. So my mother was cutting the onions for the potato salad. The way she did it at home. With great care. And into very small, finely cut pieces. After all, who likes to bite into large chunks of onions, even in a potato salad? My brother-in-law, under pressure as he was, saw the way my mother worked, with great care, looked at her in amazement and nearly flipped: “Who do you think you’re cooking for? How much time do you think we’ve got? This is a business, it’s not home cooking! Do this quickly, we need the potato salad in 20 minutes, not in 20 hours!”

My mother, in her innocence, tried to explain what she was doing and why. That even paying customers, not just your guests at home, don’t like to bite into large chunks of onions when they eat a potato salad. – My brother-in-law, of course, had already moved on to his next victim, he was not in listening mood.

So here is my question: what would you have done? Small, finely cut onions for the family, and quickly cut larger chunks for the customers because time is money? Or would you have taken your time to look after your customers in the same way as you would have looked after your family at home?

It was another busy day in the hospital. Pádraig had something like seven therapy sessions, so many that the nurse from the morning shift couldn’t get in to do the “Körperpflege”. I’m sure they’ll catch up tomorrow, when there will be a bit of therapy down-time.

Pádraig and I went out onto the roof garden again for an hour or two. It is so nice to sit outside in the late summer sun, even the late summer shade. You can hear the train passing by in the distance, the S1 going to the city centre in one direction and to the airport into the other. There are pidgins underneath the decking organising their shelter for the cold long winter months to come. There are distant voices from below, dogs barking, cars beeping. Above all, there is air and a blue sky. I just realised how much I miss the smell of the sea, the seagulls, the boats, the green hills, even the buzz of Dublin. I’d never thought that a hospital can begin to feel a bit like (I imagine it to feel in) a prison.

Pádraig’s arm is still swollen and quite colourful, but it is definitely getting better. He ate a bit of desert again (who wouldn’t do that?). His really quite brilliant (and very nice) therapist came in today to tell me that Pádraig had been again in the tilt table today, for almost half an hour at very close to 90 degrees, and did not have a problem doing that, whatsoever. He also thought, and so did some of his colleagues, that Pádraig has been a bit more alert lately.

Pádraig is on the mend. He has the determination, and the right support will help him getting better.

Before you ask, I think, it’s all about cutting the onions with great care, very thinly and in small pieces.

Today’s German (Music) Tip
So schneidet man Zwiebel in feine Würfel – immer am Finger entlang.
What’s hot
Cooking like you would at home, working like you would at home, treating people with great care like you would at home
What’s cold
Treating your customers badly
The German word/phrase/verse of the day
Boa, glaubse!

No reason to worry. Nothing serious happened today.

What happened was that we saw this German band playing one Saturday night in Garding, and it was called “Landslide”. I’m sure they explained why they were called Landslide and everything around it. The band members were old, and, you know, old people talk a lot about the past and how it all happened and all – especially if you give them a microphone and a captive audience in a smoked-filled ‘Kneipe’.

And I see my reflection in the snow-covered hill…

Unfortunately (or luckily?) the place was so full of smoke (yes: smoke!) and people talking that we could neither see the band very well nor understand what they were saying in between songs. The magic happened when I tried to find them on youtube and realised that ‘Landslide’ is one of the ‘most nicest’ ever in the world love songs. Songs can’t get much better. There are many different version of it around, including some by the Dixie Chicks (the ones banned from the radio because the criticised US President Bush), but this one here is just unbelievable, sang by Stevie Nicks and accompanied by Lindsey Buckingham on the guitar – still in love, despite it all.

Oh, mirror in the sky
What is love
Can the child within my heart rise above
Can I sail through the changing ocean tides
Can I handle the seasons of my life

If that doesn’t make you cry… Take this love, but never take it down…

And it also describes so well what is going on in Pádraig’s life, sailing through the changing ocean tides in his Dreamboat, knowing that he can handle the seasons of his life. Because love is all around him.

I had the privilege to be on my own with Pádraig today and thought that I’d have loads of time to bore him with another set of my never ending stories, to have those conversations I always wanted to have but didn’t have the opportunity (or the time) to have. But – Pustekuchen!

You wouldn’t believe how busy I was. Between getting him ready for the wheelchair, getting out, back, ‘Mundpflege’ (usually Pat’s job, when I check my email:), playing some music for him, getting Pádraig ready for the night – the afternoon and evening was gone in no time.

Can’t wait for tomorrow, for another day, sailing through the changing ocean tides. (And, maybe, just maybe, having an opportunity to tell Pádraig one of my stories.)

Today’s German Music Tip
Landslide, Radio. This is a demo recording of the German band ‘Landslide’, it’s not in German and it has been viewed just 394 times so far. So here is a chance to bring them across the magical ‘400’ views.
Another band that played in Lütt Matten over the past week-ends – and, again, they were so much better on the night than in this video.
What’s hot
Stevie Nicks and Lindsey Buckingham
What’s cold
Bands talking rather than playing
The German word/phrase/verse of the day
Pustekuchen!

How would you remember the time that ‘digital’ was introduced into the world? It was the time when the world switched from a system of ‘a bit more’ or ‘a bit less’ to something much more exact. It’s easy to say yes and no, or on and off in the digital world, but it’s much harder to say “make it just a bit warmer”  or “a bit colder”. In the digital world, you have to make up your mind. Either the current is on, or the current is off, that’s how computers work at the end of the day. My lecturer in Trinity College (my secret is out now!) said that computer programming wasn’t really for women because they could never make up their mind. That was, you will have guessed, a few decades ago. If a lecturer said anything like this these days, he wouldn’t last long in his job, no doubt.

There is another side to the digital world, and it’s got to do with our dependence on machines.

It is really terrible. Truly. When I get into Pádraig’s room, one of the first things I do is to look at the “Vitalwerte”, the figures on the machine that monitors his vital signs: heart beat, oxygen level, … That’s what machines do to me. They are really in the way. I don’t want them, they are a distraction, and the cables that connect you to them are like tentacles that won’t let you move freely.

Today, when I came in to Pádraig’s room, the same thing happened: check the machine, check it again – well, it must be broken. After a week of values for his heartbeat that were quite a bit higher than what we had seen for months, today his heart was beating slower than mine. Only then did I look at Pádraig. And he looked so comfortable, so relaxed, that I thought, “maybe the machine is right?” I let him rest and waited for Pat.

He woke up slowly, and seemed to be so much better than he had been during the week. So we decided to get him back into the wheelchair and out onto the roof garden. And it worked. His arm is still swollen, yellow and black, but the pain seems to have gone, mostly. He even opened both of his eyes today, something that doesn’t happen that often. Eating doesn’t work that well yet, but I’m sure that will come back as well.

Today was a good day.

Today’s German Music Tip
Hörbie Schmidt Band, Aus dem hohen Norden. This is one of the bands that played in Lütt Matten over the past week-ends – only that the setting in that ‘Kneipe’ is so much more intimate and nicer than the stage from this clip from the Grenzen sind relative Festival in Kiel. A nice touch is the screen in the background showing the text, as well as the sign interpreter. “Lust auf Leben ist wunderbar.”
What’s hot
Heartbeat, in the correct range
What’s cold
Heartbeat, too high, too low
The German word/phrase/verse of the day
Dialogue in the Ruhr Valley:
(1) Wie is? – (2) Muss! – Und selbst? (1) Muss auch!

When my mother heard that Pádraig was going to go to college she was all excited. Then she asked him what he was going to study.

“Irish and History”, he replied. My mother’s excitement went down a notch.

“What are you going to be when you finish?”, she asked.

“Don’t know”, Pádraig shrugged. “I’ll figure something out.”

My mother wanted her only grandson to become something. To study for a profession.  She didn’t quite understand what college and his studies meant to him. Why he was spending all this time on something that would not make him someone: a lawyer, a doctor, an engineer, an architect, something. What was he going to do with his knowledge of the Irish language, literature, and culture? Or, probably worse: his knowledge of history?

I always thought that college should be the best years of your life. When and where else would you have the luxury of learning about stuff you always wanted to find out more about, without much worry about responsibilities or too many commitments? Throw in a few trips, new friends, festivals, and loads of previously unheard of opportunities – life doesn’t get much more exciting than this. (Even though, I know, sometimes it just feels miserable.)

From what I saw, Pádraig had the best years of his life in college. And there was more to come… The challenge he is facing now is bigger what even him could ever have imagined. (He wasn’t a man going for the small stuff. He was always thinking big.) The amazing thing is that when many doctors wouldn’t agree, he went for life. And, with his friends, that’s what he is re-discovering. Life. An amazing life full of opportunities.

His arm is still black and yellow, and we did not take him out of bed today; he didn’t eat much either. But his heartbeat came down quite a bit, closer to normal – the hurt seems to go away, slowly. No doubt, in another few days, his injury will have disappeared and turned into a long distant memory.

Please keep voting for Hospi-tales on http://www.blogawardsireland.com/best-blog-post-2014/ – the blog post is still at an incredible, magic #3!

Donal Earls is going to run not just the Dublin Half Marathon next weekend, he is also going to run 42.194988km on the October Bank Holiday weekend: his first ever marathon. Please support his fundraising effort on iDonate.

Today’s German Music Tip
Konny, Karrieresong. A ‘makes-you-think’ song (click here for the lyrics) about people spending loads of time on their career but not on life. At the end, they find themselves in a nursing home realising how quickly life passed by:
Das Leben geht so schnell dahin, deine Warnungen verhalln’ im Wind
hört keiner zu ..und vorbei, die Jugend hat ja keine…Zeit
What’s hot
Life
What’s cold
Career for career’s sake
The German word/phrase/verse of the day
Na, hast Du ‘n Vogel? (hey, are you mad?)

Pádraig has been very tired, very sleepy, exhausted these days. He hasn’t really eaten, he hasn’t been in his wheelchair any day of this week, and he hasn’t been very responsive at all. Last Monday, doctors double the dose of drug no.1 they’re giving him, which could be part of the reason he is so hard to get in touch with.

Another reason is that his heart rate has been quite a bit higher than it used to be for a long time. He is also receiving only very gentle physio therapy so that chances his injuries could cause him pain are kept to a minimum. Today we heart that Pádraig had been on a tilt table yesterday that allows therapists to move him up into almost a standing position. He managed a brilliant personal best (PB) of almost 30 minutes in close to 90 degrees. All of which is brilliant news!

One doctor from outside the clinic today told us that ‘shit happens’ and I would agree. Life is unpredictable, never the way you expect it to be, hard to take at times. The important thing is to focus on the positive. In Pádraig’s case, he has been making really good progress over the past months. There have been a considerable amount of setbacks, near death experience, incredible fear and desperation – but, all in all, the most incredible thing that happened has been his coming back, time and time again. The last few days have just bee an glitch. We’ll be back to normal, to the road of discovery in no time!