Everybody feels immediate change. When Pádraig’s accident happened, my world was turned upside down in no time at all. Boom. It was such a shock that I probably won’t recover from it anytime soon.

But what about slow change? What about stuff that happens over a long period of time, maybe over years? Change that happens so slowly that I mightn’t even notice it?

Like age.

Some years ago, I had a meeting in one of these super cool US multinationals with super cool people everywhere. Guess what? I felt super cool myself. Didn’t take long And then, the meeting was over and we went down the stairs together, passing by a huge glass window letting us look into the super cool gym. A few steps further down and a huge mirror, reflecting the staircase and, of course, the super cool people just walking down the steps. Only that, in the middle of them, there was this rather un-cool, ‘slightly’ older looking man. I did not look at all in that mirror as I looked liked in my mind.

Or like (bad) habits.

I used to smoke. And I liked it. To tell you the truth, I still like the idea of smoking. Anyhow, when the time came, I gave it up. Easy. Only that for quite some time, I went into the same shop where I used to buy the cigarettes at the same time and had to find something to buy. On autopilot, I just walked into this shop to buy cigarettes I didn’t want to buy anymore, never mind smoke. It had been my routine to walk into this shop every morning for a long time and to change that routine was far more difficult than I had thought.

In essence: you can be doing something or you can be someone that you don’t want to do or that you don’t want to be. And because you have slowly slipped into this over a long time, you might be old, or live unhealthy in whatever way, or do stuff on autopilot you wouldn’t do if you reflected properly on it — you might not even notice.

So when I hear health professionals telling me, what seems to me to be, really un-reasonable things and in an unreasonable way, they do this most likely not because they are odd, but because they don’t realise anymore that what they are saying does not make sense. They have moved slowly into a space that is very re-assuring and calm — with little or no space left for ambition, enthusiasm and drive fpr change.

We will need to give them new reference points. We need to tell them that the king has no clothes on.

 

It was the most brilliant reunion with friends he hadn’t seen for some time and in a place where he was a regular but hadn’t been in five years.

The man who had booked the place sadly couldn’t join Pádraig and his friends today. He is himself in hospital. So when the party in the Conradh was nearing its end, Pádraig and us left. We had an after-party in James’ hospital. One to remember. Never to forget.

A big thank you to all of Pádraig’s really good friends who contributed to this evening!

Paella. Tortilla. Pinchos. Juan.

He spent hours today creating the most authentic, beautiful, tasty (sorry, I tried it:), and wholesome dishes, listening to Buena Vista Social Club, converting our kitchen into a very special place. For a few hours, we were all somewhere very different. I am curious to hear what Pádraig’s friend will think of the food tomorrow evening. They;ll get together in their old haunt, the Club in the Conradh on Harcourt St at 5pm for a couple of hours to celebrate (each-feiern) his birthday.

Today the funding saga continued and progressed. At a meeting at the HSE headquarters I was re-assured that the first tranche of funding will be transferred into the An Saol accounts really soon.

There was also great interest in the Creation House factory to a point where I was wondering whether we should make one last effort to get this over the line…

In any case, there is great optimism and there are great expectations – which I all share.Though: I’ll believe it all once the money is in the bank

In the meantime, Pádraig will keep celebrating and will live his life as best as possible.

There is this brilliant cover by Johnny Cash of Nick Cave’s song Mercy Seat, a friend told me today. Listen to it when you get home. I looked up the lyrics (just in case I couldn’t follow when listening) and thought it’s a song about someone innocent about to be executed.

Then I was listening to the song…

And the mercy seat is waiting
And I think my head is burning
And in a way I’m yearning
To be done with all this measuring of proof
An eye for an eye
And a tooth for a tooth
And anyway I told the truth
And I’m not afraid to die.

(That last line changes to “And I’m afraid I told a lie” in the last line of the song.)

… and I thought: in a more abstract way, this song is about life. It’s like the passion. And the end is about mercy. Whether truth or lie – what does it matter in the end? Fighting eye for an eye, a tooth for a tooth, measuring of proof – what does it matter?

Following last night’s venture into the wild of Patti’s and Nick’s powerful embrace, we had a lie in this morning. I didn’t spend much time with Pádraig but went to a meeting with the local HSE and then on to Limerick for three meetings, only one of which worked out as it just overshot its allocated time by miles and I wasn’t determined enough to just finish it. It was a bit of a disaster. Concocted by moi. Not good.

Though there are two bits of good news: we will have control over Pádraig’s budget soon (probably within two months) which will make organising his care etc. hopefully much more straight forward; AND: our local HSE area has now received the first tranche of funding for the An Saol Foundation pilot project and is, apparently, ready to sign the agreement and pass that funding on to An Saol. It has not happened yet – but it becomes increasingly more likely that it really will happen!

But I believe in love. Keep your candles burning.

What a night! A 60+ year old man and a 70+ year old woman entertaining a crowd of probably 20,000 people in an open air concert that was just fabulous. Patti Smith sang her heart out. What a beautiful and powerful voice she has! And how powerful the messages of her songs were. It was hard to top.

But Nick Cave did it. Hi range of music is just phenomenal. There was complete and utter chaos rock, gothic destruction and decomposition, and the most of melodic melodies and deep, deep lyrics. Where does this man come from? “Delirious Dublin falls into his arms“, writes the Irish Times.

Pádraig had a great ‘seat’ and really enjoyed the evening. People around us could not have been friendlier and more helpful: offering an umbrella against the sun (!), factor 50 sun cream, and even a pint of lager!

We’re back so late that we will have an hour or so of a lie-in tomorrow morning… and have asked the carers to come a bit later. It was a brilliant evening out, the sunshine was glorious and the craic was mighty! Even when we were leaving, a friend of Pádraig’s came over and put the biggest smile on his face: they had last met in Galway, prior to the accident….

And then, at the very end, two blacked out limos with flashing blue lights came in to collect Leo V., rumours had it.

“Thank you for keeping me alive”, were the first words “Sugar Man” Rodriguez said to the crowd going crazy in South Africa at his first concert there. He had completely disappeared from the face of the earth when for whatever reason his music became a soundtrack of the anti-apartheid movement and some people decided to find out what had happened to this contemporary of Bob Dylan – who everybody thought had committed suicide. Turned out that he was alive and kicking. If you have a few minutes watch the Searching for Sugar Man trailer and listen to a short recording of his first concert in South Africa. – It’s an incredible story!

First day back swimming after having been away for some weeks. It was good to see all our friends again in the pool. And it was brilliant to get back in the water. Pádraig had not forgotten anything. To the contrary, I felt that Bootcamp Germany has really made a difference. There wasn’t really any problem for him putting one foot in front of the other, of stretching that leg, of putting his weight on that leg and moving the other leg in front. Walking. Sure, it’s different doing it in the water than on ‘land’, but the patterns are the same. It was a fun afternoon in the pool.

Followed by another edition of his long-lasting birthday party in the garden, this time with a home-made cake, candle, and birthday songs – this time by the family. There will be another dash with his friends this coming Saturday in the Conradh, starting at 5pm.

Pádraig also got an absolutely brilliant birthday present today, completely unexpected, from a real good friend, poet and musician (the one who wrote Pádraig, IMLÉ’s debut single, at a time when they hadn’t even met): tickets to Nick Cave and Patti Smith tonight! It was this friend who told me about Rodriguez and this really great story of someone re-appearing out of nowhere, someone who was believed to be dead, becoming a voice of a popular movement on the other side of the world.

Thank you for keeping me alive.

 

This is like the windmills. Are they for real? Are they in my imagination? Is fighting them just pure madness? Sure, it won’t ever make a difference! Not to me, not to Pádraig, not to anybody else. In the meantime, life goes on for everybody else. Weddings, travel, jobs, nights out. Skyfall is on the telly. I am sitting in the middle of the night writing up rubbish. Listening to Pádraig’s breath.Making sure his head is in the right position so that he is comfortable. Skyfall was what I was talking about, the music I used for my presentation that night in Sanya. 26o Celsius. I keep the city in the list of cities in my weather app. Do you do that? Keeping an eye on the places you have been to using the weather app? Pforzheim 18cC, Obereggen 8oC, Alexandria 23oC, Kazan 15oC, Kathmandu 21oC, Brewster 11oC. Brewster. It hurts so much and the sadness is hardly bearable. Talking about Skyfall in a fancy presentation. Winning a poolside quiz with one of my best friends, getting a phone call at 1am when Im just about to go to bed, booking flights, Shanghai, Denver, Boston, renting a car, travelling, travelling, travelling, trying to remember the lyrics of ‘Forever Young’, travelling, making phone calls where they put me right through to the A&E, no problem, anytime, he is still alive, they don’t tell me that by now they had asked twice, at least, for organ donation, travelling, walking into the hospital, into the A&E, into his room, seeing him with his head all bandaged up, “No Bone” written on it with a black felt pen. Nights and days without sleep, without food, being stopped by the police with their guns drawn asking me at 2am to say the ABC, in English, standing beside the car, wondering whether I’ll be shot on my way to the hospital, walks into the rising sun in Hyannis Harbour, thinking: we must get out of this place, what are they talking about, meeting the organ donation team and the prospect of an intolerable life, what is that an intolerable life, telling us to get some sleep and rest, this will be a long journey, we will need all of our strength.

This is life.

We’ll be going to Boston. We’ll be going to Hyannis. And we’ll walk the last mile to Brewster on 27 June 2018, to arrive at that stretch of the road where this truck tried to overtake Pádraig who never stood a change, to arrive there at 10am, the time of the accident.

Five years later.

When there are days that sadness almost drives me crazy because I’m thinking of what he should be doing right now of what he surely would like to be doing. When there are days I am so happy because we are all together, because he enjoys life, and because he is trying so hard to make the best of what he’s got, we’ve got.

Forget about yesterday. Forget about tomorrow. Forget about what could or should have been. We’re here. Together. Now. Crying, laughing, living. We couldn’t do any better than that. Skyfall on the telly. Pádraig finding his rhythm, his most comfortable position to breathe and to sleep, me listening, going over to help, going to sleep soon.

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Walk for Life
Brewster (MA), June, 28^th2018, 09:00am – 10:00am

Five years after doctors asked his parents whether they really wanted an ‘intolerable life’ for their son Pádraig (now 27) he returns with his parents and closest friend to Cape Cod to ‘walk’, in his wheelchair, the last mile to Route 6A in Brewster where that catastrophic accident changed his life.

Irishman Pádraig Schäler (27) and his parents, Patricia O’Byrne and Reinhard Schäler, together with Cian Waters, one of his closest friends, will cross the Atlantic for the first time since Pádraig was hit by a van trying to overtake him as he cycled to work at 10am on June, 27, 2013.

Prior to walking the ‘last mile’ from the Brewster Police Department on 631 Harwich Road to the spot of the accident near 2019 Main Street, Brewster, they hope to meet Attorney General Maura Healy in Boston to receive an update on the investigation into the serious issues they raised in relation to the accident investigation.

With their ‘Walk for Life’, they want to:

• Remind drivers to ‘share the road’ and drive responsibly;
• Call for thorough, un-biased accident investigations, especially those involving cyclists;
• Highlight the enormous emotional and financial burden on families of victims;
• Repeat their call for a programme of driver education on the Cape and an initiative to make adequate insurance cover for drivers obligatory.

They were horrified to hear a police officer still at the accident spot on that day five years ago telling them over the phone that “he cycled out in front of a van”, and just a few hours later reading on the internet about what sounded like a conclusive police statement blaming their son not only for the accident but also for the horrific head injuries he suffered – pre-empting the results of what should have been a thorough traffic accident investigation.

They were shocked to hear that their son’s cell phone was confiscated by the police to be examined and even his bicycle taken in for examination, when neither the driver of the van, nor his cell phone, nor the van itself were checked by the police. The van, in fact, was brought to a garage that same afternoon by the driver. Despite the gravity of the accident, no significant outside resources were called in to assist with the accident investigation.

The parents were astonished to be told by the Police Department that such accidents sadly happen every summer involving ‘foreign cyclists unfamiliar with the rules of the road, wearing dark clothing, wobbling along on the wrong side of the road’ – again apparently blaming their son for the accident. Their son Pádraig was a very experienced cyclist who had not just undergone formal cycle training in Germany, he had also cycled extensively in Europe, including the length of the Italian peninsula.

While Pádraig still requires 24-hour care and  extensive ongoing neuro-rehabilitation, while he is still unable to speak or to control his body, he has made amazing progress over the past five years, thanks to an extensive neuro rehabilitation programme largely financed by his family and friends, and, above all, to his unbroken desire to live and to enjoy life as best as he can – even under very difficult circumstances. Pádraig has travelled the “Camino” to Santiago de Compostela in Spain, participates in regular swimming sessions (he was an Irish champion swimmer), and  continues going out with his friends as much as possible.

The financial cost of this accident to Pádraig has been estimated by independent experts to be around $12 million – nowhere near the value of the drivers insurance policy, even if it that had been fully paid.

• Join Pádraig, his parents, and one of his closest friends at 09:00 on 27 June 2018 for their ‘Walk for Life’ from the Brewster Police Department to 2019 Main Street, Brewster. Let them know you’ll be joining them here: http://bit.ly/Walkforlife
• Support their call for better road safety driver education and un-biased accident investigation by writing to the Attorney General and the Governor of Massachusetts.
• Help Pádraig’s family and friends to cover his life-long specialised neurological rehabilitation programme by kindly making a donation via CaringForPadraig.org or https://www.gofundme.com/PadraigsWalkforLife

Irish Road Safety Authority “Overtaking Cyclist” Campaign

Information on the IRSA campaign to call on motorists to keep a safe distance when overtaking cyclists on urban and rural roads. The campaign aims to educate motorists on recommended minimum passing distances.

http://www.rsa.ie/RSA/Road-Safety/Campaigns/Current-road-safety-campaigns/Cyclists/

http://www.rsa.ie/en/Utility/News/2018/Motorists-Urged-to-Give-Cyclists-the-Space-to-Ride-Safe/

It’s still hard to keep my eyes open. Each time I sit down, they close and I start drifting away. The same is happening to Pádraig. It’ll take a while to get over those four weeks at bootcamp and that epic journey back home!

In case you’re not living in Ireland: we are having our summer! It is warm, bright, and calm. No wind whatsoever. A perfect garden day!

What one of Pádraig’s friends set up a couple of years ago as a sensory garden is taking shape. It’s the first year that the plants are covering the ground. It’s looking really great and the smell is fantastic! Even the ‘water features’, simple granite slabs, are beautiful, producing that calming sound of water flowing down a stream.

Pádraig had a visitor this afternoon, a good old friend. We did the German thing and had Kaffeetrinken mit Kuchen. It was so nice and so quiet you could have thought we were in the middle of the country.  Sadly, that friend who came over to visit is in hospital for some tests and checkups and had to go back there early in the evening. Even thinking about hospitals and listening to what is happening to our friend is making me feel terrible. People are trying to do their best (well, most of them:), but working in a large organisation, in an institution, requires you to adapt to how that institution works. There is no room for individuality, for individual preferences, requests, wishes or ways of being.

The only choice is: custard or jelly for desert.

Neither of them terribly exciting.

We got home half an hour after midnight A bit of an epic journey using almost every kind of transport, including a train driving 250km/hr – before it broke down in the middle of nowhere for 45 minutes. There were cancellations, breakdowns, and delays. Almost unsurmountable obstacles for wheelchairs, ultra-high tech aids, and beautiful people offering their help along the way, including a Deutsche Bahn Train Chief telling Pádraig to press the SOS Button if he needed assistance on the train, and personally helping to lift (!) Padraig onto and out of her train.

There were dozens of small miracles happening yesterday and dozen of angels helping us along the way.

(We we’re listening to Nick Cave’s “Into my Arms” along the way…)

In the end: we made it.

Which shows: in some cases you have to keep trying and pushing and sweating (and crying. And laughing.) to get you where you want to go. But you have to keep going and trying and take a chance.

We picked Stuttgart Airport for our return journey because it’s closer to Pforzheim than Frankfurt and because flights back to Dublin leave earlier. Today we got a lift by car to Stuttgart. Smooth journey and we arrived there 3 hours early.

10 minutes later check-in opened and we were told that the flight was cancelled. They didn’t know why. They offered a hotel, dinner and breakfast. But we needed to get home.

Ryanair later in the evening but quite expensive. Or rebooking with Aer Lingus and flying back from Frankfurt.

So. S-Bahn from the airport to the Hauptbahnhof. If you have ever been in Stuttgart Hauptbahnhof then you know what expected us. If you don’t know the station: it’s a bit like the new airport in Berlin, only that it is open.

Onto a train to Frankfurt Airport. A bus to terminal 2 where checkin opened as we arrived.

Terrible discussions about getting the seats we had booked previously in row 1. We wanted them because there’s more room for 6’7″ Pádraig . The man at the checkin didn’t want to give it to us for reasons I don’t understand. Eventually, he allowed Pádraig to sit by himself in a window seat in row one, kept the middle seat free, and put us in the two aisle seats of row one. Mmhhh…

And then: an hour and a half delay.

We’re sitting in a mobility lounge. And wait.

We left Pforzheim at around noon and at the moment it looks as if we might get back to Dublin just before midnight.

What a journey….