Just arrived in Germany’s secret capital. As always, not all things went as they should have. There was a last minute gate change and instead of docking on a bridge, the plane parked in the middle of the airfield. They wanted to carry Pádraig down the stairs of the plane because it was too late for lifter vehicles or because there was light snowfall or … The police had closed and we could not get into my fatherland until they reopened the border crossing for us. Once we were in, we spotted our two lonely bags in this massive now empty hall, luckily still around.

45 minutes on the S-Bahn. Looking for a lift on the wrong side of the platform, jumping through a train to get to the other side, locating the lift, bringing us out of the station.

When we arrived at the hotel, the lift was too small and there was almost no room to squeeze the wheelchair into the room. The area, just beside Central Station, is interesting, to put it mildly. It’s snowing outside.

The important thing is: we made it. And even more importantly: Pádraig is having a ball travelling and camping out in cheap hotels.

A wise person asked me the other day: “What would you do if you rang your mobile phone provider and would not get the service you expected?” – “I would switch”, was my answer. Would you do the same? My guess is: you would.

This is why companies spend a fortune trying to find out what it is that their customers are looking for. Customer satisfaction is what they need to achieve to grow their business. It’s bad news for them when customers start to complain and the word gets around that this particular company doesn’t deliver what they promise.

I am sure you can think of examples: remember the Galaxy Note 7 literally catching fire? Remember Kodak cameras or “New Coke”? Kodak cameras are a thing of the past and customers preferred the ‘old’ coke… you’ll probably have your own preferred examples.

Now, how does that compare to a system that tells their customers to be thankful for what they are getting for their hard-earned euro, produce more appalling statistics every year, don’t admit to any mistake made until they settle in the highest courts, and literally put their customers in what their own employees call ‘unsafe’ environments?

You know, I was thinking that such a system should be sidelined, ignored, substituted, and put out of business. Not fought. After all, that would be a waste of perfectly good and very necessary energy. Complaining, fighting, shouting is, generally, not good for you. Building, sharing, caring – much better!

Anyhow…

Pádraig got this new table for his wheelchair with a build in button. Here is what he can do with it.

It’s no longer ‘just’ his left foot that is operating a switch that he can use to answer questions, it’s also his hands. Brilliant progress that many people didn’t expect.

He has also started to make more use of the bathroom, not just for showers, but also for combing his hair, watching himself in the mirror as he is doing it. Check out the super-cool comb.

It’s easy to overlook the complexity of what is going on here. He holds the comb, moves it with his hand, lifts up his arm and combs his hair (with help), while watching what is going on in the mirror. He is doing something himself that so far someone else has been doing not just for him but ‘on’ him. The level of autonomy and of taking back control might seem minuscule but is, in reality, enormous. Not least because this is just one of the first steps. And you know what happens when you take the first steps – usually they are just the beginning of a long and wonderful journey.

This is what it is all about: moving forward, revelling in what is possible, assisting and supporting, caring, motivating, discovering, enjoying, being on a wonderful journey.

It’s definitely not about fighting, arguing about who is right and who is wrong, being depressed because life is so shitty and no-one cares, getting constantly angry because the system has abandoned us, non-stop shouting, complaining and roaring about all the injustices. – Of course, I do all that and I do feel all that myself (far too often). There isn’t a day I don’t feel like some of these emotions. I wouldn’t be human if I didn’t. But I also know that ‘that’ stuff doesn’t get me anywhere. I cannot change any system, I cannot change people who have closed their eyes in the face of injustice and neglect. But I can try to change and try to be an example – and, even if I will, at times, fail, hopefully can make people think. And change. Because they want to.

Become Dreamboaters:)

Too tired to write, talk to yo tomorrow!

Some great news today about the Dublin-based offices of one of the world’s largest banks (and companies) selecting the An Saol Foundation, completely out of the blue to us, as their charity of the year. Wells Fargo, the company that operated the famous Pony Express, will support An Saol in their work allowing survivors of very severe acquired brain injuries to live their lives with dignity and respect. – This is all down to one person who made it happen, who did not give up when she explained to her colleagues that this is the right thing to do!

Their job ads have changed since their early days, I am sure, and so must have the risks involved for their employees. Although – banking has never been risk-free.

This is a FIRST for An Saol and, at least in my mind, a huge recognition by a huge company and their Dublin office of the importance of the work of An Saol for sABI survivors, their families, and society in general.

Thank you, Wells Fargo!

Today, I also heard for the first time of Neuro-Developmental Treatment (NDT), a relatively new approach to treating clients with neuromuscular dysfunction, including that caused by acquired and traumatic brain injuries. Apparently, there are therapists in some hospitals in the country who are training in NDT which is based on the famous Bobath approach but which goes beyond Bobath’s relatively ‘cautious’ approach. Certainly something I’d like to learn more about…

As Patrick’s Day is approaching, we are slowly getting ready for another very brief trip to Germany to visit the Munich and the Therapy Centre in nearby Burgau with Pádraig to see one of their consultants and therapy leads.

usus est rerum omnium magister Julius Caesar is reported of having said once. His wisdom, that experience is the teacher of all things, didn’t prevent him from being killed (I guess you make that ‘experience’ only once in a lifetime) but I think there is a lot of truth in these words when applied to most circumstances.

I’ve been on a ‘career break’ for the past half year or so which means that, while I have not given up my job at the University of Limerick, I am not receiving a salary.

A career break may be allowed for most purposes including further education, domestic responsibilities, travel abroad, employment abroad, starting a business.

So yesterday I came across this article in The Irish Times reporting about a vacancy in the state service that attracts a salary of up to €250k plus incentives. The job in question is that of the Garda Commissioner, Ireland’s head of police. (The last one was forced to resign amidst tons of scandals.) But what really attracted my attention was that it said:

‘No policing experience necessary’

While that offer was tempting, the 250k salary would go some way to address some of the issues we have to deal with, it made me wonder… I decided that I wouldn’t apply and give this opportunity a miss…

Pádraig had an incredibly intense day: getting out to his grand aunt’s funeral really early, mass, graveyard, get together and lunch. We spent time talking about her, our memories of long walks with her and her dogs, her love of Irish, her genuine interest in the lives of all the family, her kindness. We will miss her – the likes of her will never be with us again.

In the afternoon Pádraig had one of the best swimming sessions he has had. He topped it all up with another long cycle in 2nd gear. He must be so proud to be able to do all this. And better every day. With the perseverance and experience of an athlete, experience you don’t get for nothing…!

You can change them. Into higher. Into lower. Gear.

When my father learned how to drive I was at that age when I knew everything. When I was wondering how everybody else around me didn’t see, like I did, the obvious. Like my father. It was obvious that when you wanted to drive faster, you had to change into a higher gear. And there we were. Going up that hill on the way to my grandparents’ village. And the car nearly stopped. My father had his right foot firmly down on the gas pedal, pushing it as hard as he could into the floor of that dark green Volkswagen Beatle. I was shouting at him to change into a higher gear, so that we’d go up that hill faster, so that he wouldn’t get the car to a halt. He had put the car already into highest gear, for some stupid reason being convinced for a minute that I really did know it all.

Until he relaxed and did what was right. He ignored his know-it-all son. Stopped the car. And slowly brought the car up that steep hill in first gear.

I pretended to be asleep for the rest of the journey. Of course, I didn’t admit to my stupidity. I didn’t say sorry for having been so horrible. But I had learned my lesson.

If you want to get up a steep hill, stay in a lower gear and move slowly. Until you’re getting over the hill. That is when you change into a higher gear and gain speed.

Why do I remember this today?

Because Pádraig had been going in gear 0, then in gear 1 on his MOTOMed most of the time. He had managed gear 2 for a few minutes. But today, we thought we had mixed up the gears because he was flying. In second gear. For a long time. That’s when we thought it was time to move up to third. To gain some speed.

Not everywhere, but in Ireland it was Mother’s Day today. They day when thousands of mothers wake up to the smell of burned toast, cold coffee, and spilled orange juice. The day when you should avoid going out for a nice quiet meal with your loved one like the plague. We avoided the lunch hour rush and left it until the early evening (to avoid the evening rush) and still got caught between two tables of cocktail-drinking young mothers and a really loud band. Not that I would have any strong feelings about either of them, but both are to be avoided if you want to have a conversation. We made the best of it. It was fun, just in a very different unexpected way.

Pádraig and An Saol made it into the Irish Independent (SIndo) today.

It’s interesting to compare the headline in the printed version (see above) and the one in the online version which reads: “Man (28) who suffered serious brain injury in ‘freak’ accident offered ‘miracle’ lifeline by HSE”.

We also received an email from the photographer who came to the house with pictures that weren’t published.

Reinhard Schaler whose son Padraig who suffered a severe brain injury outside the former Smurfitt printing press in Drumcondra which he hope to convert into a rehab centre. Photo: Tony Gavin 9/3/2018

Reinhard Schaler with his son Padraig who suffered a severe brain injury while working in the USA. Photo: Tony Gavin 9/3/2018

Reinhard Schaler with his son Padraig who suffered a severe brain injury while working in the USA. Photo: Tony Gavin 9/3/2018

We woke up this morning not to the smell of burnt toast but the very sad news that one of Pádraig’s grandaunts had died during the night. I went to the hospital when I received the news. She had had a fulfilled life and had reached a very good age. But all that is, of course, relative. Although she had been ill and in hospital nobody had expected her to die. Her unexpected death really made me feel the fragility of life. We come and go, and there is no timetable for that journey.

When I got back home, the streets were still empty and the day was just breaking. I decided to go for my first really long run (in preparation for the Hamburg marathon) – which I finished in a reasonable time but completely exhausted. If nothing else, it had cleared my head.

We were sitting in the kitchen this morning having our breakfast when Pádraig called us to change the radio station. He was bored listening to the talk. We know that he cannot (yet) change the station when he wants to, he needs someone to do that for him. What we didn’t know was that he could let us know that he wanted that to be done for him. When we changed the station from the ‘talk’ to some music he reacted with a broad smile. That was a first this morning. And a first he can justifiably be very proud of.

Between 3 May and 12 May 1916, 14 men were shot to death, including James Connolly who was shot in a chair on 12 May because he was so badly wounded he could not stand.

Today Pádraig visited Kilmainham Jail where they had organised a tour, as Gaeilge, for visitors. The old part of the jail is, unfortunately, not accessible by wheelchair. But he made it into the stonebraker’s yard where the executions took place, into the museum part and into the cafeteria.

I wonder, what did it take to carry a severely wounded man on a chair, bind him to it so he wouldn’t fall off, blindfold him and then shoot him dead?

There was no ‘Thursday with Pádraig’ yesterday, none of his friends could make it. But, there was, instead, a ‘Friday with Pádraig’ tonight when one of his old friends called to the house with some of the most delicious food and a bottle of red wine (which neither Pádraig nor I were allowed to get even a sip of!).

And then we got a text from Pádraig’s sister that she was going to be on the air on 105.2, the frequency for Radio Rī Rá during the weeks surrounding Lá Fhéile Pádraig. It was a brilliant programme, with tons or super-cool music, and really happy chat (as far as I could tell:). Pádraig even got a mention.

This is what he used to do before the accident, and the kind of thing he really, really enjoyed and was so enthusiastic about. So I asked him at the end of the programme whether he thought that his sister had done a good job. He put on a huge smile and said ‘yes’. I asked him whether he thought she had done a better job than he would have done, and there was an even bigger smile and another, very definitive ‘yes’.

I’ll leave it here…

“Sea at dusk” is the name of this painting by German expressionist Emil Nolde. Funny, the first thing I saw in this picture was the Dreamboat. The National Gallery in Dublin has an exhibition of Nolde’s work and it’s something I’d like to go and see with Pádraig.

But life is busy. Like today: Getting up, OT, breakfast, Physio, working with brain communication (it is as fancy as it sounds:), and in between a visit from a journalist. And that was just the morning.

I continue training for the Hamburg marathon and am enjoying the longer evenings. My training plan tells me that I have moved into a new phase, the one with longer runs. Like a couple of 12k fast runs and the ‘relaxed’ 20k one on Sunday. I am exhausted just thinking about it:)