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!

Someone from China asked me some days ago whether I was interested in writing an article for their publication, saying they would fully understand if I had no time time to do this as Christmas was approaching and they knew this was a busy time for family and friends. It was very nice of that person to be so concerned and she also demonstrated her knowledge of important European ‘holidays’. Although I thought: it’s still a bit early to be thinking about Christmas in September.

Pádraig was clearly getting better today. It was the last day of his “Onkel aus Amerika” visit and he really made a big effort for him. We think he is trying very hard to speak, it’s like whispering, as if he was talking but without having found his voice yet.

We just realised that he hasn’t been out of his bed or in the wheelchair since last Sunday. We’re afraid to cause him even more pain moving him out of the bed into the lifter, into the wheelchair, and then back into the lifter, into the bed. We’re also not doing his exercises and he cannot be turned onto his left. His left upper arm keeps changing colour, but it doesn’t seem to be getting much worse. His main consultant came in today and explained to us that with patients like Pádraig a spontaneous haematoma is, although it does not happen often, possible. The good news is that they are watching it now. It’ll all be downhill from here.

Today at Aldi

I went into an Aldi store this evening and guess what I found? The first Christstollen of the year, beside loads of other really typical Christmas food. So I’m wondering – was my Chinese colleague right after all? Is Christmas really around the corner? Should I get ready? Or is this just time gone mad? Or, maybe an Aldi executive becoming desperate trying to come up with the next feast day to sell sell sell? Like ‘Wintergrillen’ in January? In my own mind, there is time for everything (like in the brilliant song by the Birds). A time to cry, a time to say sorry, a time to forgive, and a time to celebrate Christmas – but definitely not in September. That would be too early for anybody’s taste – except, obviously, for that of the Aldi sales manager.

Oh – please keep voting for Hospi-tales on http://www.blogawardsireland.com/best-blog-post-2014/ – we are at incredible magic #3!

Just saw on the RTÉ news that Seán FitzPatrick will be getting legal aid.  Seán FitzPatrick was, just in case you have forgotten (or are to young to remember:), the chairperson of Anglo Irish Bank until 2008 when he had to resign because of scandals leading to a collapse of the bank’s share price and eventual nationalisation in late January of 2009, for which people in Ireland are still paying. The Irish Citizens Information website says: “The Legal Aid Board provides legal aid and advice in civil cases to people in Ireland who satisfy certain requirements (principally, their means must be below a certain limit and there must be merit in the case)”. – In other words: Seán has no money and his case has sufficient merit to justify the expenditure of our money to pay his solicitors. Mmmmmhhhh… what have I missed here?

Loads of examinations. Several doctors. And the verdict is: Pádraig has a haematoma (I’d call it a bruise) on his shoulder and upper arm. As he is getting blood thinners (that’s what everybody gets who spends many hours in bed and doesn’t move that much to avoid a thrombosis) that haematoma is a bit bigger than it would usually be, we were told. In 15 months, it’s the first time he’s had a haematoma. From today, he is getting more pain killers to deal with the discomfort (I’d call it pain), pain killers he did not get over the last two days because they could also have masked a fever caused by a possible infection, his doctor said, which has now been eliminated as a possible cause for the swollen shoulder. We don’t know yet what the cause of the haematoma is.

Pádraig has not got out of bed since Sunday. We did not get him into his wheelchair because we did not want to hurt his shoulder and arm even more. For his visiting friend from Ireland today, it was a great pity that we could not get out and about with him, at least up onto the roof garden. It’ll be months until she’ll be able to visit him again.

Today, just before checking out, I checked Aldi’s ‘reduced products’ stand and discovered a ‘Mangoteiler’. I can be an impulse buyer and have been known to buy stuff, especially in Aldi, not because I needed it, but because I thought: “Well, you never know. Although you mightn’t need this right now, one day when you will need it, you mightn’t find one.” Do you know this feeling? Are there ‘pockets’ in your house full of ‘stuff’ you bought, you keep, you don’t get rid of because, well: just in case? Yes?

I think we all have had moments when we did really stupid things. Things we regret now. When we hurt others or spend money on stuff we shouldn’t have spend it on. But there are limits. In my case it was the Mangoteiler. Had I bought this beautiful kitchen utensil today (although every household should have a Mangoteiler:), I know for certain that I would have been told to bring it back to the shop immediately for a full refund. And I know that – out of the context of the shop, in the cold light of the day – I would have realised that I had made a mistake. I would have said: “You are right and I’m sorry. I should not have bought this Mangoteiler. We do not need a Mangoteiler. It was a stupid idea to buy it and I’ll bring it back.” But, as Elton John sang back in 1976, “sorry seems to be the hardest word”, for many.

Oh – with 1,016 popular votes, Hospi-tales is currently at No. 3 in the Best Blog Awards Ireland 2014, just about! So please keep voting on http://www.blogawardsireland.com/best-blog-post-2014/  –  Thank you!

Something strange happened.

One of Pádraig’s friends told me he had the best two days of his life working up to 1 or 2 o’clock in the morning, for more than 12 hours every day. For free! AND, he had to raise the funding for the job.

Surely, work is not like that. Think: Monday morning. The alarm clock goes off. You beat it into the ground. Somehow you don’t manage. And it goes off again. (Whoever invented ‘snooze’ for alarm clocks should be sent somewhere very far away and never be allowed to return to civilisation again, in case he’d impose another of his ‘brilliant’ ideas on us.) You can’t win this fight against technology, so you give up, you give in, and you get up. You crawl out of bed. You wonder why weekends are so short and working weeks are soooo long. Why holidays never seem to last longer than the blink of an eye, but work never stops. You’re overqualified and underpaid. You invest your life into this job but most of the return goes to your employer. You have no control over what you’re doing, but made responsible for the outcome. – That’s work. Right?

The reason why this friend of Pádraig’s had the best two days of his life, working, for free, was because he did something that he really enjoyed doing; something that had meaning and made sense to him; that he had control over and that he was doing because he wanted to, not because he was told; something that involved 40 other brilliant people directly, and many many more indirectly; something that was so exciting that sleep seemed just like a completely overrated waste of time. He made loads of news friends in the process and even got to know a second cousin of his who he had never met before.

The result of his work, and that of his new and old friends, will soon hit the charts. We got a sneak preview of the CD yesterday – it’s fantastic. Really. Just unbelievably good. It’ll take just a little bit longer, a bit more time, but I tell you: it’ll be worth the wait! Dreamboat!

Pádraig’s heart rate was quite a bit higher than usual yesterday. Today, Pat noticed that his left shoulder was swollen. Something that would, in a ‘normal’ situation, not really be a cause of concern – and did not seem to cause any unease among the pflege, or care team – does make us really really nervous, especially when we see that Pádraig really seems to be in pain. We became quite concerned and upset. There were also some yellow patches on his arm near the swollen shoulder that looked very much like bruises to me. So they took blood samples and did another set of tests on those sample which, as far as we know, all turned out ok so far. We wanted to talk to a doctor but were told, they had all left (it was after 4pm). Eventually, it turned out that there were doctors, only that they weren’t too enthusiastic about getting involved in checking out Pádraig’s shoulder. One surgeon was going to double-check the x-rays and possibly take out some fluid from the shoulder to get that tested too. We waited for him but eventually had to leave.

We should have the results of the tests carried out tomorrow, the next working day. There is work, and there is work.

Music tip:
Klaus der Geiger: Nein, nein wir woll´n nicht eure Welt
“Wir sind dem Leben auf der Spur”
Germany’s best known busker!