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.

The Nachsorgekongress in Frankfurt finished today. The national curfew on entering Ireland unfortunately not. The first Aer Lingus flight back home was going to be late night on Sunday which I booked and went back to the hotel I had just checked out of in the morning. Then I saw a Lufthansa flight leaving this evening for Dublin, straight away bought a ticket, and immediately checked in. I had been in the hotel just for an hour and asked the receptionist would they refund my money because I could now get back to Dublin tonight. (It was one of those hotels where you have to pay in advance, in case…) They said no, they couldn’t and wouldn’t. A second later I received a text from Lufthansa saying they had cancelled tonight’s flight to Dublin. Panic. But only for a few minutes until I received another text telling me that they had re-booked me onto tomorrow’s very early morning flight. – So, in the end, and with a bit of excitement, all kinda worked out. Hopefully.

So this afternoon I took a walk to downtown Frankfurt, home of the euro. I nearly bought a 17 euro ticket to the Frankfurt Opera House to see “L’Africaine – Vasco da Gama” by Giacomo Meyerbeers. When I heard it was 4 1/2 hours long I first hesitated: although 17 euro for a 4 1/2 long opera is a snatch… and then decided: I was going to give it a miss. Even this being a truly ‘grand’ opera and all, I would most likely have fallen asleep half way through. It’ll be an early night instead.

Carers are still thin on the ground (with some notable exceptions), just like snow, so the folks at home are mainly managing on their own and I feel bad not being there to help. There was a bit of a crisis today as carers did not turn up at all to look after an 85+ year old very ill bed-ridden neighbour whose equally mature partner was becoming increasingly nervous about things – which is when an incredibly generous and caring neighbour (who had also looked after Pádraig on occasions) stepped in. It was a life-saver, maybe in the true sense of the word. And it makes me think: what do care agencies believe happens to a very ill bed-ridden octogenarian if hey are not being look after and cared for over a number of days. In my books this is nothing short of abuse of the elderly and far worse than any beast approaching from whatever direction…

It’s when you think all is working out that things turn around 180 degrees. What a happy day it seemed to be this morning when my plane left at a ridiculously early hour and got me to Frankfurt in time for the 12th annual brain injury after-care congress.

I just checked tomorrow’s flight back home to Dublin and discovered that Dublin Airport will be closed altogether. The country will be in lock-down tomorrow. And guess what: Saturday’s flights are all sold out. Will I have to stay in my Heimat for a while?

In the meantime, it got this brilliant photo of Pádraig enjoying the snow.

Apparently, he threw a snowball at his sister… seriously!

I know that the probability of someone from Aer Lingus reading this is slim, never mind someone from Lufthansa. But just in case… I could need some help to get back home so as not to leave them on their own.

There are 9 year children in Ireland who are experiencing snow for the first time. Isn’t that incredible. To allow everybody having a good time together, there won’t be any buses tomorrow and practically no public transport. Schools will be closed not just tomorrow, but also on Friday. From 4pm tomorrow there will be a curfew (well…). The government is telling everybody to stay at home. In Dublin, shelves are empty and there are reports on bread vans being hijacked. Pubs have special offers (a pint and a slice of bread) for civil servants.

I’ll be getting up at 3 tomorrow morning to catch a flight to Frankfurt to attend the annual after-care congress (Nachsorgekongress). The big question is: will the airport be open?

Given that a lot of therapists couldn’t drive in the snow today, we had a bit more time to ourselves. Time for conversations with Pádraig. Time to ask him how things are going for him. How he is feeling. What he misses most. What he would like to do. To make it easier, we asked him to answer on a scale from 1 to 3. “1” being the least interesting or least missed, “3” being the most interesting or most missed ‘thing’.

Turns out that he misses being able to talk (2), but not terribly. He really wants to get An Saol going and go out every day, rather than being stuck in the house or his room most of the time. He didn’t have very strong views on what he misses or cannot do. By contrast, he has very strong views on what he wants to do: travel and getting around.

He knows that travelling isn’t easy for him. Spending long hours in the wheelchair, being transferred on planes and spaces that are not really comfortable for him, to say the least, being ‘accommodated’ in cars that are too small or beds that are too short for him is not fun, I am sure. But all that fades into nothingness in comparison to what he seems to be getting out of his travels. Being amongst people, Seeing, smelling, hearing, feeling, tasting what is going on in the world. Living. That is what he wants. Even it it is not always easy and, at times, and literally, a bruising experience.

What really impressed me most was that, while he did acknowledge that he is missing things and, for example, the ability to communicate better, his focus is very clearly and unambiguously on what is possible.

I am learning from Pádraig. Every day.

Here is the question: is it better to expect the worst to then find out that it wasn’t quite as bad as expected? Or is it better to just keep going and deal with whatever life throws up as it happens?

Tonight the supermarket shelves in Dublin are empty. No bread. No milk – except goats’ milk.

The people of Dublin are not going to take a chance. Whatever snow storms are going to hit the city, they’re going to be prepared. The TV, the radio, the people on the street have not talked about anything else but this potentially status red type storm…

Tuesday is swimming day for Pádraig. He is really doing well. Incredibly well. He did the ‘usual’ like kicking his legs, pulling and pushing himself from the side of the pool. But we started something new: working with his arms, something he hasn’t done that much in the water so far…..

Are we or have we been prepared for the worst? – Definitely not. I’d rather ‘run’ into a storm blindfolded than worry about what potentially could happen if…

If you look at this from the perspective of a German judge, what you’re seeing on this image is a restriction of liberty that requires a judicial review. Restriction? Where?

The table in front of Pádraig’s stomach, the one his arms are resting on. To be exact, you wouldn’t need that judicial review and permission given by a judge in the home, but you would certainly need it if the table was used in an institution.

When I mentioned to the judge that doctors in Ireland can medicate persons who don’t have the capacity to decide for themselves and on their own without any kind of permission given by relatives (or other legally appointed guardians), that, in fact, they can decide what will happen to these persons without even having to disclose this to the family or any other appointed person or guardian, that judge was speechless and said that this was a very dangerous if it really was allowed.

Now, Germans might be just that little bit more sensitive to this issue because of their history, but history is there to learn from to try and not to repeat the fatal mistakes of the past. It’s easy to find out why and how the Nazis killed those who they considered to be not more than just a burden on society.

Pádraig went food shopping this afternoon. We wondered whether it would be worth the hassle to put on his jacket, to get him out of the house, into the car and into the supermarket. Just to go shopping. Turned out it was: he did picked food for his dinner, for his breakfast and for his sweet tooth. He could pick between options. And you wouldn’t believe what an enormous difference that little tiny bit of empowerment and self-determination.

No restrictions!