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:)

Following the big freeze and the even bigger snowfall, Pádraig couldn’t wait to go out today. It was cold, but the skies were blew and apart from the odd patches, the footpaths were clear of snow. Not being able to go out for days, almost weeks, is not good for anyone. So he had a great time getting the fresh air and meet friends on the street. There’s nothing like a friendly neighbourhood where people stop and talk to you.

We had to go to the pharmacy to pick up some stuff. The pharmacist also looked at Pádraig’s file and asked whether he needed anything from his prescriptions, a long list of many different potions from those preventing seizures to those helping with the bowel and many more.

Then the pharmacist realised that we hadn’t collected any of those drugs for Pádraig in a long time, like more than a year. And that we hadn’t even collected the many different food supplements he had taken, or the high calorie drinks in months – because he just doesn’t need them anymore. The only prescription ‘drug’ he is still taken is a calcium chewy tablet. And even of that he’s only taking half – because he is now drinking enough ‘super’-milk to get the calcium he needs.

There are many ways to describe, even measure, Pádraig’s progress over the past months and years. This is one that is one file. Very clinical. Independent. Measurable. Unambiguous.

Brilliant.

“Simplicity is the way to Happiness” is the byline to this picture. Looking at the old man relaxing in the sun by the sea, leaning against the old house, some clothes drying in front of the window – who wouldn’t agree?

It’s a picture by Croatian photographer Marjan Radovic submitted to the 2018 Sony World Photography Awards that made it into the shortlist.

I want my life to be simple.

This is definitely not: RocketScience. But it is great fun. Using your fingers. Clicking on a screen. Making pictures appear on that screen. Matching them up. Collecting points. We’ll do the RocketScience next week. And stick with the fun this week.

It’s one of these things. You see stuff. You’re getting excited. This is something we definitely should be doing. You have great plans. You want to try it. You’re even getting prepared and set stuff up. And then life takes over. And other stuff happens. And you feel bad because you had great plans. And they’re not materialising because you don’t do anything about them.

Well, yesterday I did something about one of my great plans (that hadn’t materialised because I hadn’t done anything about it). I texted a friend, did a few searches, went to online stores and downloaded apps we though Pádraig could use. We’re not familiar enough with them yet. But if today’s first trial is anything to go by, this is definitely something he is enjoying tremendously. He didn’t stop smiling.

He knows that this is not RocketScience. And it doesn’t have to be, for the time being. Because this is about him doing things he hasn’t been doing for years. And now he is able to do them again. What a happy afternoon for all! It really rocked!

It’s amazing what two nights of very little sleep, followed by a bit of travel did to me. Was it all worthwhile? Maybe that’s the wrong question to ask. But travel, adventure, meeting other people, listening to stories, making new connections has to be good.

An ‘event’ I will remember is the short ‘concert‘ Stephan Völker gave. His brother Klaus suffered a brain injury and after their parents couldn’t continue to look after his brother he did. He told us about their story and it was deep, moving and, hard to believe, funny.

One of the very interesting people I met was a man whose son had suffered a severe brain injury. They live in the North of Germany. And guess what? He’s planning to set up a rehab centre using robotic equipment. We decided to stay in touch and exchange reports on progress. Another one was a woman whose son had suffered an injury when he was 6, 20 years ago. Every word she said was precious and wise. It really highlighted the need of people coming together to share their experiences and to learn from each other. One of the many points she made was that fighting the system is just really tiring and creating so much negative energy. Much better to focus on what can be done, focus on how to progress things and then, if needs be, take decisive action to remind everybody of their obligations. One of the many details she shared was that her son spent 5 years getting about 5 hours of therapy a day over 4 weeks, followed by a one week break. When I heard that it nearly made me cry.

The one-and-a-half-day congress also reminded me that everything has to start with the needs of the survivors and their families. Talking about legislation, about care plans, about path ways, about equipment and therapies only makes sense if the starting point is the help that the survivors and their families require. Everything else is abstract and self-centred. The problem is that this is, in very many cases, not being done.

One thing I also realised when listening and talking to people at the congress is that when they talked about severe acquired brain injuries, they were not talking about survivors like Pádraig. They were talking about people with a significant level and ability of independence.

Pádraig today used his voice to a point where we thought he was using it repeatedly on purpose. We spent some time trying to find and then to use apps for brain rehab and training. Haven’t really found something great and convincing yet but keep looking. He’ll also have to get out of the house soon. It’s nice looking out at the snow, but not forever.

We’ll have to plan our next trip. Together.

Here are Pádraig and his tin whistle. Not much of a song yet, but first steps.

There are days when I am either much more alert (and out and about) or when the moot unbelievable things just happen. Like: Dublin Airport “connecting the world” when it was doing the opposite; or the German Der Spiegel giving out about the Diesel scandal and the tobacco industry, opposite a huge one-page ad for Camel;Amazon apparently selling $260m a pop Airbus 330 planes (more likely: an automatic adaptation gone completely bonkers); the airport cleaned of snow, except for the Aer Lingus planes…; the spotless Lidl car park when drivers could hardly get into Woodies, just on the opposite side of the rod;

Oh – I made it back to Dublin very early this morning, on an A330 Airbus by Lufthansa, when the Aer Lingus planes were still covered by snow.