“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.

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….

I am sitting in the dark. Just the laptop screen is bringing some light to the room. Small lights on the keyboard help me to find the letters as I am typing. The windows are wide open to let in some air.

You want it darker. 

If you are the dealer, I’m out of the game
If you are the healer, it means I’m broken and lame
If thine is the glory then mine must be the shame
You want it darker
We kill the flame

Lyrics mean different things to different people and in different circumstances. Listening tonight, as I am sitting in the dark, to You want it darker by Leonard Cohen, the quintessential minimalistic song, reflects my mood tonight. And it carries some peace that is stunning. You want it darker. We kill the flame.

There’s a lover in the story
But the story’s still the same
There’s a lullaby for suffering
And a paradox to blame

Cohen wrote and recorded this song when death was close. The time when you accept things as they are. Even if they are not quite as you wish them to be.

To “be ready”, to be able to say “hineni” is, I feel, one of the highest achievements for anybody. Not only when death is near, but even more so when you are totally focused on life. There’s no more chasing, no more hatred, no more disappointed. All this is substituted by the acceptance that “the story is still the same“, no matter what.

No matter what.

It’ll be our last day here tomorrow. A short day: one hour physio, one hour lokomat, one hour SLT. An hour or two driving.  Two hours flying. 15 minutes home.

I feel stronger than before. I’m sure Pádraig feels stronger. Physically and mentally. The road will be long and winding, but we have the strength to travel it. We’ll be on top of the wave and there will be times when we’ll be out of the game, when we’ll be broken and lame. But it won’t make a difference. Because we’re ready. Ready to take on this journey together. And along the way we’ll have fund and enjoy the moments of laughter, humour, love and tenderness. As well as sitting in the dark. Listening to the most brilliant verse, voice and music you could imagine.

Here we are. We are present. Hineni.

Our stay in Pforzheim is coming to an end and Pádraig is doing well, demonstrating to his therapists how determined he is to make progress and what that progress looks like for him. During his SLT session to today, he did not only continue to use a straw to drink (still very small sips nut nonetheless…) he also managed to control the different muscles controlling facial expressions much better. He is working hard to produce sound, controlling his breath, making slow but steady progress. For the first time, we seem to manage to walk with Pádraig ourselves, me holding him from the back and someone else helping Pádraig to control his legs. It would be really good if we could walk with him when we are back in Dublin, even for a few minutes every day.

Tomorrow will be a ‘holy day’ here, Corpus Christi. Businesses and shops will be closed. Some therapists will work, but the programme will be reduced. We’ll have a short programme on Friday as we will have to leave at around noon to get to the airport in time.

Time to reflect on our stay here. And on our return to Dublin.

We all had a brilliant early bird dinner together in one of Dublin’s finest restaurants, tonight five years ago. When we left the restaurant, there was a seagull in front of one of the houses on this beautiful Georgian square, with a few small twigs in her beak. Almost tame. Not flying but walking up and down some steps in front of one of these really old houses. We didn’t know then. But it was the call of seagulls that would follow us for the next few years and remind us of this night that we had spent together as a really happy family. Trying to make as think what could have been. What should have been.

It’s Pádraig’s birthday today, as it was this day five years ago.

Five years ago, he had just finished college and was going to spend the next three months in the Boston area on a J1. That night, we were not just celebrating his birthday but also marking the beginning of the summer that would bring him to the USA and us to Germany. It was our last evening together before we were all going to go off in different directions.

It is hard to remember and think of the joy that we felt when he was born 28 years ago. When the memory of that night just five years ago is so strong and, at the same time, so incredibly sad.

It makes me think that it is good not to know what life holds for us. It would be unbearable.

Today, was a rollercoaster of a day. So sad looking back. So happy being here with him, eating the cake he had chosen, getting a bag full of birthday cards. Blowing out his birthday candle.

Pádraig had his first of a serious of ‘parties’ to mark his birthday and his incredible determination to live his life with energy, positivity, and fun. As we all should, really. Some of his German family was here to join us for lunch and ‘Kaffee und Kuchen’ with his first presents – there will be more when he’ll get back home this Friday. And then there will be a big and very special birthday party in the Club of Conradh na Gaeilge on Harcourt Street on 9 June.

There was a huge “Happy Birthday” banner in the therapy centre. There were people singing a range of different birthday songs in different languages almost non-stop. It was so nice and so good to see how many people were wishing him well.

Birthdays are funny days. No matter what the circumstances. No matter what the age. One thing is certain, for me, at least: they are the perfect occasion to practice that wise way of living in the moment and seizing the day. Looking back doesn’t change anything. Planning the future is usually pretty futile. Speculating what could have been or, worse, should have been, is definitely not helpful for a healthy mind.

Even if those ubiqutous seagulls keep trying to make me think that way.

There are Drive Through burger joints. There are Drive Through banks. All those places that are so new and modern and that make it easy for drivers of cars to do whatever they need to do without getting out their care.

Though, honestly, have you ever seen an Autofahrerbriefkasten? How far can you go to make life easier?

The angle I took the picture from isn’t great and it is a real ‘snap’ because I quickly wanted to capture something that I hadn’t seen before.

We, as well as a few doctors and therapists, have been speculating about Pádraig’s eyes for quite some time now.

What we know is that he can see with both eyes though it seems that his sight is slightly better in one eye than in the other eye. We know that often he seems to have his eyes closed making people think that he is asleep when, in fact, he is just relaxing his eyes, or he might be concentrating on something that doesn’t require his eyes to be open. Having his eyes closed doesn’t mean he is asleep.

He rarely opens both of his eyes. We have asked him why and we have consulted with doctors. There is a ‘view’ saying that because his eyes are not aligned (following the accident and operations) he might have double vision when he opens both eyes at the same time. And that this is the reason he keeps one of his eyes closed most of the time, and he just opens one of his eye — usually the left eye.

Today, for a while, and for the first time, he switched eyes. He kept his left eye closed and he opened his right eye. When I asked him he said that he could see ok with his right eye.

I had to think about those strokes with the ice across various muscles in his face over the past week and a half during his SLT sessions, and was wondering whether they were having an effect!