Here’s a secret: I asked my father once to go with me and meet the director of a college where they taught theology. I didn’t want to become a priest (the celibacy aspect of that vocation didn’t really appeal to me) but I really wanted to study theology. Luckily, the man was very straight with me and told me in no uncertain terms that there weren’t many jobs for lay theologians around. I say luckily because I now know a few people who did study theology despite the prospect of jobs and, through their study, lost their faith altogether. And while I am probably not a really ‘traditional’ catholic believer, in my own way I still have faith. Which, in many cases, but probably even more under the current circumstances, is not such a bad thing to have.

What I find surprising is that I am not going for the ‘desperate’ kind of faith. The one when you feel that your situation is so bad that praying might be your last resort – it can’t hurts and there might be a slight chance that it could make a difference.

To the contrary. What I have found is believe in the goodness of people. And not just ‘believe’ but hard evidence. I would never have thought that there is so much goodness, so much love, so much care and compassion in people. Family, friends, neighbours, but also complete strangers that have helped Pádraig and us beyond any expectation. It’s a humbling experience. Sometimes I think that it would be so much easier to give than to receive. When I get the real, the real physical sensation that my body is flushed empty, like a cistern empties when you pull the string. It starts from the top of my head and moves right out of my feet.

When I feel like this: how can I deal with the mundane aspects of my life? How can anything else still have at least some degree of importance?

Pádraig had a full day today. He didn’t sit out in his wheelchair (it’s not really ‘his’ wheelchair yet – ‘his’ wheelchair is still in transit from Denmark) but he had the daily physio, followed by respiratory therapy, the speech valve, and the MOTOMed-viva-2-Giro-de-Schön – all with no or minimum levels of extra oxygen. The respiratory therapist had taken a break from working with Pádraig, and it is great to see him back. He is using a really smart gadget, called the EzPAP, that amplifies the air pressure when Pádraig is breathing in and also prolongs the breathing out process by creating a counter-pressure. The effect is that alveoli are encouraged to exchange more CO2, and deeper parts of the lungs are reached by the air coming in, moving and loosening the secretions – all of which should improve his oxygenation and breathing.

Today’s German Music Tip
Gisbert zu Knyphausen, So seltsam durch die Nacht (2008). Singer Song Writer from Hamburg playing live.
Dann reden wir genau wie bisher von unserem Leben, das sich immer so weiterdreht, wir immer noch nichts verstehn, von dem Chaos in unseren Hirnen und dem Gang unserer Wege. … Wir warten auf den Anfang der Nacht, wenn das Licht ausgeht und unser müdes Herz wieder lacht.

What’s hot
Respiratory Therapy
What’s cold
Breathing with O2 support
The German word/phrase/verse of the day
New Yorker verrückt nach Nutella-Broten (head line today in Germany’s most read boulevard Zeitung, Bild).

The world is upside down, even if you’re not living in Australia. You listen to the news and wonder: “Did I just hear voices, or was there really just an Irish Government Minister saying that the country needs more houses?” Or did the Turkish Prime Minister really just say that “mining is a dangerous business, there are no two ways about it”? There are people wondering when we are going on holidays. We should take a break! Others wonder how we can deal with mundane stuff like ‘work’ when our world is in turmoil? When I rise in the mornings (like a Phoenix:) I try to clear my mind running a few kilometres around the block – which works for a (short) while and only until I start gasping for air. Like I’m gasping for air when I think about Pádraig being injured and getting hurt.

Today was a good day: I graduated from theory of suctioning to practice. Pat will try it next week. Once we have shown that we can do this properly, we’ll be allowed to put on Pádraig’s speak valve ourselves. Later, the physio and OT (who have a good German sense of humour!) sat Pádraig out into the borrowed wheelchair (yes, the new deluxe model is still on its way from Denmark which, if you look it up on a map, does not seem to be that far away, surprisingly). That was followed by an intensive music therapy session. And rounded off by just over 30 minutes of Giro d’Schön-Klinik ‘cycling’. Pádraig stayed ‘awake’ during all of these sessions and did not need any additional oxygen. Amazing. He is working so hard, he is giving all he has, and he is completely focused on getting out of this bed and getting well. To see so many people around him (and away from him, geographically) doing all they can to help him, is what gives him the energy and the conviction that he is able to get out of the ‘place’ he is in now.

Our plan is that when he does, we will turn the world upside down. There will be dancing and singing; talk, lots of talk; long nights until the dawn breaks; there will be happiness and Lebensfreude.

Have to go: Good Night. See you tomorrow!

Have you heard about music therapy? Sounds a bit like black art? You wouldn’t believe how well it works. It’s the one therapy session we never attended, and I still haven’t. But Pat stayed in during one session today, because Pádraig had a speech valve on and was sitting in his wheel chair – and the therapist made a (very generous) exception. Pat said that it was very impressive how the therapist connected to Pádraig, how Pádraig reacted to words that were not said but sung by the therapist. There is a real, tangible, almost physical connection happening via the medium of music. More-than-meets-the-eye-stuff.

I liked the comment earlier about stuff being OBVIOUS for Pádraig. So here are a few things, 1-2-3, that became obvious to me over the past months.

(1) Never give up
Whatever happens, we will continue. This is not a one-hour-a-week/month-visit-your-ill-family-member-situation until they get better and then move on. Nothing and no-one will put us ‘into our place’ or convince us that it might be better for us to ‘move on’ with our life. We are his voice, his interpreter, his carer, his advocate.

(2) Time does not matter
What does not happen today, will happen tomorrow, next week, or next month. The fact is that it will happen. We  realised that our time scale just changed. The urgency is gone and we’re all in this for the long run. It’s not a quick three-month rehab; something like getting back the use your arm after it was broken, or getting back to walk after a hip replacement. This is long haul.

(3) Because he’s worth it
Your family member is worth it – whatever it takes. Patients in Pádraig’s situation have to be treated as humans with dignity, not as bad investment cases. This can never be about return on investment (ROI). Helping and supporting someone when they most need it is about human dignity, ethical convictions, and so OBVIOUSLY the right thing to do. Follow the ROI route, think it through, and you’ll end up in hell. Seriously.

Love. Obviously.

Just heard about the decision by the European Court of Justice that companies like Google will have to delete information from their search results, if that information turns out to be old. What should I do with the following (that is if you do spot the ‘odd’ one out)? How did Richard get in there?

Today’s German Music Tip
Lolita, Seemann Deine Heimat (old but re-recorded). – Well, I never thought I’d post this song, it’s a real “Schnulze”, but it’s short:)
What’s hot
Sincerity
What’s cold
Being mean and narrow minded
The German word/phrase/verse of the day
Artig (heard it on the radio today and realised that I had not heard anyone saying that for decades:)

Remember the time when living was easy? I do. When I had my Sunday clothes. When I had to go for after lunch walks on Sundays but really wanted to watch ‘Flipper’-bald-wir-er-kommen… Life was so predictable, routine. None of that today.

Have you ever thought that you could find out what a person really values, not by looking at what they like but by observing what really annoys them? What Pádraig’s friends wrote about what really annoys him, was so revealing about what kind of person he is, what he stands for.

There is the idea that “In Gedanken sieht die Zukunft immer farbenfroh aus. Immer nur suchen, aber nirgendwo bleiben, denn es ist aufregend alleine zu sein. (…)” And later on, in reality, “Es ist so schön, zu Hause zu sein. Ich will kein Cowboy mehr sein.” The idea of Freedom and Adventures, Freiheit und Abenteuer, is great – until you just want to go home. I didn’t know for decades but know now where home is. I also know what I want in live. And it’s remarkably close to what Pádraig told me some years ago in a note, what he thought I, we, should be doing.

Another good day today. Pádraig is really very stable these days, no panic, no infections, no oxygen problems. It’s brilliant. We will use this time to really get him going. The MOTOMed-viva-2 bike. The speaking valve. Sitting out in the wheelchair. Every day. Until the roses come out in the rose garden. Remember the rose garden? The date?

Whatever. We are four. Rise like a Phoenix. October. Dublin. Marathon. Magic. We will keep going and never give up. Go Ciara:)

Anyone?

Today’s German Music Tip
Gisbert zu Knyphausen, Wer kann sich schon entscheiden (2012).
What’s hot
Get going, Be straight, Honesty
What’s cold
Fobbing off
The German word/phrase/verse of the day
Verkauf’ mich nicht für dumm!

Radio Nora in the North of Germany play my music. Listen. This morning they played “Forever Young” – not the Bob Dylan version, but the one from German group Alphaville – which I never stopped listening to for about two years when I was 23: Let’s dance in style, let’s dance for a while, heaven can wait we’re only watching the skies. Hoping for the best, but expecting the worst, are you gonna drop the bomb or not? (…) It’s so hard to get old without a cause, I don’t want to perish like a fading horse. Youth’s like diamonds in the sun, and diamonds are forever. So many adventures given up today, so many songs we forgot to play. So many dreams swinging out of the blue, oh let it come true.

One of my friends (yes, I have two!) says turning on German radio is like traveling back in time. – Nothing wrong with a bit of time travel, at times, say I.

I’ve been thinking about things that really annoy Pádraig. There are a few. Can you think of some? Should be easy! Come on! Note them down right now and post them in a comment! – And then I started to think about why these things are annoying him. Can you help me here too? If you had to explain what all these things that annoy him have in common, what they all boil down to, what would that be? Again, write it down or try to remember it and post it in a comment. – For me, what it all boils down to is that things, stuff for Pádraig is pretty obvious. What he has problems with, I think, is that other people just have these, to him, surprising and incredible problems to see things as clearly as he does. And if you want to do something, you just do it – getting t-shirts from China, building a dream boat, editing a book, organising a concert, whatever. And in debates? You might have some interesting points to make, and you should, of course, but really, he would be pretty clear about letting you know that he has the better arguments:)

Today, Sunday, is a quiet day in the hospital. No therapies, less hectic. Thinking about the Giro reaching Dublin today, he cycled his own distance on the MOTOMed-viva-2 with the window open and the playlist compiled by his friends.

Last weekend, his friends in Aer Lingus did fundraise for Caring For Pádraig during their annual Gala. Thank you all very much for having organised this and for having supported this fundraising effort!

The next events coming up for Caring For Pádraig supporters are the Flora Dublin Women’s Marathon on 02 June 2014 and the Mountain Flag Challenge on 07 June 2014. Thank you so much to all who are involved in the organisation, the participants, and their supporters!

Tonight, I got a text from my other good friend (remember, I have two!) who said that he’ll join me in the Dublin Marathon – we will ‘rise like a phoenix’ and will run as Phoenix 1 and Phoenix 2. – I think their might be a Phoenix 3… Any more?

Forever.

Today’s German Music Tip
SDP feat. Sido – Ne Leiche (2010). “SDP” is short for Stonedeafproduction, two musicians from Spandau, Berlin. Never heard of them before, but this song has almost 20m hits on youtube. They sing in German, and the information I found about them says that they deal in their songs with topics of daily life and world affairs, all at the same time – though often with ironic undertones and satire. This song is, superficially about the problem faced by the singer when he found a corpse in his house: how will he get rid of it? As it turns out, there’s loads of corpses around everywhere..
What’s hot
Youth and diamonds
What’s cold
Songs forgot to play
The German word/phrase/verse of the day
Muttertag (today, in Germany)

Rise like a Phoenix!

Went back to run for the first time after the Marathon. Short and slow. Next week will also be quite relaxed and then I will start on a more focused programme for the Dublin Marathon in October. Five months will be better than just two months of preparation. While I was running today, I was thinking about the time Pádraig told me in no uncertain terms (in his nice but quite direct way you might be familiar with) that I was gaining weight and that he couldn’t believe how much and how quickly I was eating. Would you believe it!? Of course, there is no contest between him and me in relation to weight – but there is no doubt that, at least at times, he eats huge portions (bigger even than mine!). Even here, he is getting 3k calories (and that was before the regular cycling!). The difference is, I am sure he would have told me: he seems to need it. I just think I do:)

We were telling Pádraig about the Giro ‘Italia in Ireland (!) and the bad fall by Dan Martin who now will miss the rest of the Giro after breaking his collarbone in a crash right in the opening trial in Belfast. Pádraig did his now usual 35 min, 3.2km training on the MOTOMed-viva-2 this afternoon. In the morning, he sat out for about 4 hours in his hot-wheels-on-fire-can’t-wait-for-the-rosegarden, and managed the speech valve really well for just over an hour. He also did not have any oxygen or humidified air connected to his “Feuchte Nase” for most of the day. Despite that, his oxygen levels staid up quite high (97%) while doing the Giro d’Schön.

Tonight, Saturday, is our one-hour-night in Lütt Matten, a pub in Garding, Germany’s third smallest town (by territory), the last stop before Tating. It’s on a peninsula called Eiderstedt. It’s absolutely deserted during the winter, swamped by tourists during the summer. Yet, it’s the closest thing to an Irish Pub you’d find anywhere. There is live music over the weekend, all year round, and on Tuesdays nights, during July and August, the whole city is converted into a free, big, weekly Electric Picnic. All the music is free, and there is a great atmosphere  – both in the Pub and the town. Tonight, there was a man singing all  ‘my’ songs. Heute hier morgen dort. Guantanamera. Leaving on a jet plane. Me and my Bobby Mc Gee… Why did that make me cry? How pathetic can one become? I decided to get a guitar to Hamburg. To the Schön-Klinik.

Pat made Pádraig smile today when she read out to him the first of five things that makes everybody happy (from thejournal): finding money in your jeans pocket. It was such a nice moment, that I checked my own pockets:) When he gets going again in his jeans, we’ll have to make sure to leave some money in his pockets.

Rise like a Phoenix!

Today’s German Music Tip
Serkan, Geld in die Tasche (2008). – Rap. Turkish. Mannheim.
What’s hot
Smiles
What’s cold
Wind and rain
The German word/phrase/verse of the day
Erwarte nichts, doch rechne mit allem.

Pat read out the news today. One piece was about the most successful country in the history of the Eurovision song contest not making it to the final, for the first time since 2009 (when Sinéad Mulvey and Black Daisy sang “Et Cetera”). This time, the country was represented by a singer wearing a dress of which a young reader of the journal said that “it did not fit her”. Others asked whether the promoters had not noticed that it would not be enough anymore to present a song accompanied by a few bodhráns, two ladies putting their hands on their heart to indicate where the “Heartbeat” was happening, and a few dervish-style dancers.

“The Wiener takes it all” was without a doubt the funniest (non-competing) song title last night. The imaginary recording of this song was presented by one of the presenters of the night (having renamed herself Lisa Chorizo) to Conchita Wurst, singing “Rise like a Phoenix” for Austria.

Conchita was 33/1 before she performed. When she started, betting was immediately suspended by many bookmakers who brought her from 25th place right up as the hot favourite at 5/2 to win the Eurovision for the first time since 1966. Who ever said the Austrians are a conservative boing bunch? Conchita is anything but boring… And there is not question about her dress not fitting…

Pádraig was missing his friends today. We tried to compensate, but there is really no competition. He sat out in the wheelchair for a short while, tried out the speech valve again, and we did some MOTOMed-viva-2 exercises with him in the evening. I had a long chat with one of the doctors today. Much of what is happening with Pádraig is not run-of-the-mill. There are not that many young people with brain injuries around for such a long time. And we all really want just one thing: to make sure that Pádraig gets the best possible care and therapies to support him on his way to recovery. It is so good and heartening to see how everybody tries so hard to help Pádraig and how they are dealing so well with this unusual and, at times, difficult situation.

Pádraig, Douze Pointe.

PS: Tonight, instead of hots and colds, or German music tips, a joke tweeted today by Claire Mary Mc Cabe @ClaireMMcCabe:
“How did the hairdresser win the marathon? He took the shortcut.”

A note from the editor

It’s five o’clock in the morning, that strange time of night. I’m having a conversation with a friend on Facebook Chat in Irish, he’s writing a history essay that is due at 11am; he only has 400 words left. The pair of us are half working on our own and half talking to each other on Chat. Then he tells me that he has just written 200 words of his essay in Irish by accident and that he didn’t even notice that he wasn’t writing in English anymore. This is a perfect example of the power of Irish storytelling, even of the power of reading. It changes your thinking without you even noticing in amazing, boundless ways.

This book is the end result of a small-scale idea that was born before Christmas. I thought we might get five or six shortstories, we got fifteen. Fifteen good stories. This is an insight into the quality and high standard of Irish writing in the college (and the interest that is here), one only needs to look for it.

The aim of this project from day one was to give students an opportunity to publish shortstories in Irish and we have succeeded in that respect. There are plenty of English publications in the College, Tuathal is all the Irish speaking community have (a great magazine, by the way). Of course there are some errors to be found in this collection, but this is the effort of students, not an academic journal.

This collection boasts a wide range of stories – from some set in Dublin to one set on Spaceship IE2095! Some deal with the big questions in life and others deal with the more trivial. It struck me as I was reading through the stories, was Fiona (from Siobhán Fay’s story) sitting on the same hard chair in the same hospital as Colm (from Oisín’s story)? It seems we are all connected as one people, even when it is not so obvious to us.

Publishing this kind of book is wonderful the first time, but it is a true achievement to publish it a second time and that is that challenge that faces someone new next year when I’ll be gone on my way, wandering the streets of the city.

I would like to thank the writers, the sponsers and most importantly, you the readers, from the bottom of my heart.

Enjoy these stories, read them under the hot midday sun on the cricket pitch.

Yours,
Pádraig Schäler (March, 2013)

This morning, I received an email from one of Pádraig’s friends, Jen, who had taken the time to translate Pádraig’s “Eagarfhocal” to “An Scríbhneoir Óg”, a book he edited in March of last year, just over a year ago, just before his final exams, and only a few months before heading off, over the big pond, to Cape Cod. I have never been so sorry that I don’t speak, read, or write Irish and that, while I was really proud of Pádraig when the book came out, I could not read his intro to the book nor his own contribution in the original version – yet. I read the translation this afternoon and this evening, and each time, the more I approached the end of Pádraig’s note, the more I cried, as the world just slipped away from me. – Five o’clock in the morning, that strange time of night. Having a Facebook chat with a friend in Irish, dreaming of wandering the streets of the city next year, now. – I know that our dream boat will keep us afloat in this sea of tears. Because we know that we will never give up. Believing in the power of dreams is never ‘mad’. To the contrary, it’s the essence of ‘real life’!

A poster from the Snámh Aodhán brought for Pádraig with 50 ‘mad’ swimmers doing the impossible, showing Pádraig the way!

That is the approximate, lowest, yet unbelievably large number of people who, Aodhán believes, have contributed to Snámh Phádraig. Isn’t that amazing? He has put together the final statistics and figures for this incredible effort by Pádraig’s friends, though they haven’t really sunk in with me. It’s just so gigantic.

Today brought such an array of good news, I’m sure I forgot some aspects of it:

• Wheelchair: his current chair works ok, but there is a new one on its way from Denmark! In the meantime, he sat out again today for almost four hours. (And while doing it, Pat asked him to move his right foot, his left foot, and both feet together – he managed the left foot, and the right foot, but struggle with both feet at the same time.)
• Arm splints: they are being adjusted, and a joint is going make it more flexible
• Stockings: the second edition of the personalised and custom-made with-name-tag Vorsprung-durch-Technik-Stockings is back and, so far, seems to fit much better
• Speech valve: worked perfectly today, for just over an hour
• MOTOMed-viva-2: in regular use – today for around 35 minutes, 3km+
• Three really great friends over from Dublin to visit Pádraig

AND: from today, nurses will be allowed to put on Pádraig’s speech valve when we are there. A N D: we will be ‘trained’ to become more directly involved and suction Pádraig. Next Monday, we will try it on a model, and on Wednesday, we’ll do the real thing. (No, I’m not thinking about giving up the day job quite yet!) This is really so good, I almost can’t believe it. First the MOTOMed-viva-2-bike. Now speech valve and suctioning. Next thing has to be the wheelchair! And, of course, the rose garden!

Another effort is on the way by a whole industry to support ‘Caring for Pádraig’. Localisation World is coming to Dublin’s Convention Centre on 4-6 June 2013, an event I have been at for many years. The organisers, old friends, together with other friends from the industry are organising the MOUNTAIN FLAG CHALLENGE – HIKE DJOUCE AND PLANT YOUR COMPANY FLAG – HELP RAISE FUNDS FOR ‘CARING FOR PADRAIG’ for Saturday, 07 June 2014.

PS: Still very tired from the Marathon. Saturday will be the first day of training for Dublin in October:)

Today’s German Music Tip
Not a music tip but a video of last year’s Hamburg Marathon, a full 2:58hrs long:)
What’s hot
Where to start…?
What’s cold
Nothing today
The German word/phrase/verse of the day
Rathaus (voted word of the day by today’s Irish visitors:)

Never thought I would, but tonight I was thinking – well, RTÉ is not that bad:) How come? Well, I was watching German TV. Well, I was trying to watch German TV. Maybe Tuesday night is a bad night. A really bad night. It was so bad it was almost funny. Incredible. And there were not just a few dozen, or hundred, or thousand, but probably hundreds of thousands, if not million of Germans watching this! Nobody would accuse Angela Merkel of being exciting (I think?) or even entertaining – and tonight on Germany’s state-owned TV channels, it felt as if they had dramatised Angela’s life (if ‘drama’ and her life is not a contradiction in terms). I thought of RTÉ, because someone had sent me a link to a new (?) Irish group that performed on last Friday’s Late Late Show, The Riptide Movement’s new single “All works out“.

I can’t bear to see you in this way
Your heart is heavy
Your eyes pain to see
I know you feel lost
I know you feel scared
I know you feel down
I’ll be with you every step of the way
Tomorrow’s another day
It all works out

What a great song and great lyrics. You could forget it was the Late Late Show:)

Today was the big day. When we arrived, Pádraig’s nurse was looking at us, then proudly looking into Pádraig’s room. Before we could see him, I knew what had happened. And I was right. Pádraig, the tall fellow, was sitting in a wheelchair! Slightly too small with a few bits and pieces that didn’t really fit (more “Nachsprung” than “Vorsprung” durch Technik) but, nonetheless, he was finally sitting in a wheelchair. It was brilliant. No more waiting for the viva-la-Thekla to arrive, just a lift into his wheelchair. With a bit of luck (and enough staff being available), every day. Which is exactly what he needs.

After four (!) hours sitting out, and back in his bed, he did another just over 30 minutes of ‘cycling’ on the MOTOMed-viva-2! Didn’t seem to bother him at all. To the contrary, judging by his hear beat and oxygen levels, it really helped him to breathe, process the air and the oxygen, and relax.

Pádraig is also swallowing much better, we feel. Tomorrow is our weekly meeting with Pádraig’s speech therapist when we hope that he’ll get the go ahead to start using the speech valve on a daily basis. I know he is ready. I know that he needs to feel that people believe in him being able to take all this on. I know that he’ll be well able to manage this. No doubt. It all works out!

Today’s German Music Tip
Jan Delay, Türlich, türlich (2013). – Not really a great recording, but a bit of an impression of how the Hamburg Media School take their coffee break during one of their events on (where else?) the Große Freiheit 38 just off the Reeperbahn.

What’s hot
Wheels
What’s cold
Barriers

The German word/phrase/verse of the day
Türlich, türlich, sicher, sicher, alles klar (auf der Andrea Doria)