“So kann das nicht weitergehen!” – I’m sure there is a translation for this, something like “It can’t continue like this”, but, as is the case with many translations, this one doesn’t quite hit the note. A bit like an Irish friend telling me that there ain’t a word in the Irish language that quite expresses the sense of urgency in the Spanish word “mañana” – the English translation of this German expression doesn’t quite capture the sense of determination to stop what is going on and to change course.

What am I referring to?

On my macro level, the lack of official interest, the lack of responsibility, accountability, transparency, and, above all, ambition, honesty and pride, in relation to the rehabilitation of survivors of a very severe brain injury – this lack has to be turned into overwhelming support. On my micro level, Pádraig needs to be participating in life outside the house. I find it difficult to spend so much time here, for Pádraig it must be so much worse. We have to do more immediate things like cinema, concerts, museums, walks in the city, and start planning mid- to long term action, trips, journeys, adventures. The way it is at the moment feels like being trapped in a space that produces claustrophobia, like a straight jacket.

Yes, Pádraig is making progress, slow and steady. But a life making slow and steady progress needs jumps down into the unknown, explosions of colour, leaps into the thin air, blind dates with adventure.

Pádraig got easily bored and always looked for exciting, interesting, new stuff.

I’m beginning to think that all the stuff we think is difficult to organise, his care, therapies, rehabilitation, is easy in comparison to avoiding boredom.

PS: Tonight, Pádraig had mashed potatoes, beans and sausage. Apart from the potatoes nothing was mashed. We’d never thought he could eat beans and sausages just like that. A complete underestimation of what he can do. I can only imagine, how much nicer it must be to taste and feel the texture of the food, instead of everything being mashed or pureed…

A few years ago, she lost almost all her possessions in a wild fire that gave her and her  husband 30 minutes to vacate their house. This summer was like a deja-vu when her chosen hometown of Napa just North of San Francisco was threatened by a huge wild fire, leading to forced evacuations and the closing down of her school.

Having spent a few days with us, one of our oldest common friends went back to the West Coast, the wine country. Last year, she had organised a huge welcome party for my co-cyclists and myself at the end of our 1000km ride from Hollywood to Napa, raising funds and awareness for severe acquired brain injury and An Saol. On the first day in months that the heavens opened, it poured, and the town was literally flooded!

She did, a few times in her life, what I feel at times I should be doing. Make radical changes. Leave everything behind and go where life is exciting. Stop talking about Alaska but pack up and go there. Stop fighting for miserable hours of therapy, stop explaining why a highly vulnerable non-verbal ABI survivor cannot be cared for by a non-experienced, non-qualified, non-track-record-holding taxi driver, stop writing letters and emails, stop making phone calls, stop pushing that rolling stone up the hill from where it will inevitably roll down again, and instead embarking on an exciting tour of adventure and discovery, going where no wheelchair has gone before, blowing our minds and imagination, having insane fun, experiencing the wonder that the world is, breaking out of this self-imposed locked-in syndrome.

Isn’t all that Pádraig is doing training to prepare for this? Standing, turning, lifting. Cycling the MOTOMed, using it as an arm trainer and a leg trainer. Getting the circulation going. Brining up the oxygen. Keeping fit. Recovering muscles that you can loose in a flash and have to fight for to recover.

Getting ready. Preparing.

What would you do if the world ended tomorrow? What and who would you take with you if you were stranded on an island in the middle of nowhere? What is important, what is essential in your life, or for your life?

Whatever it is, there is this instinct to do everything, to do whatever is necessary, to survive.

The tragedy is that no matter how hard we try, we’re going to fail. At the end of all of our efforts is failure.

The essence of human endeavour is existentialism. Making the effort despite the certainty of the unfavourable outcome.

Pádraig was smiling a few times today because his sense of humour is there as it has always been. He has a way of smiling at things that are obviously not working out the way they are supposed to.

I think: he has a lot to smile about in this life in which nothing is working out the way it is ‘supposed to”.

I wonder about where we are and where we’re going. I’ve said so often: we’ll never give up, we’ll never give in. We’ll keep going, we’ll keep trying, we’ll keep fighting.

To the end.

Juan is a good old friend of one of Pádraig’s good old friends. His name is a bit of a give-away: yes, he is Spanish originally. Which is important. Juan is also a cook. Which is equally important. That’s as much though as I know about him. Which is not that much. Though it is probably more than he knows about us and what his perfect, freshly prepared Spanish food has done for us and especially for Pádraig.

Here’s a bit of a selection of what Pádraig’s friend brought along tonight.

We briefly contemplated it but just couldn’t do it: mincing this perfect taste and these perfect textures fro Spain. So we gave it to Pádraig as it is. And guess what – it wasn’t a problem for him whatsoever!

On one hand, this demonstrates the obvious: Pádraig is getting really good and so much better with eating and drinking. On the other hand, it demonstrates that if something is nice, if you’re motivated enough to do it, to succeed, you can do it. Whatever it is.

It’s one of those nights where my eyes close and the head is hitting the table. I’m exhausted, tired, kaputt.

I’ll just say ‘good night’ and promise to be back tomorrow!

“No, you can’t” – Someone should really have the guts to say it. Forget O’Bama. Forget those who believe they can do whatever they like. None of this “Is féidir liom” stuff. They can’t. No they can’t. And we should tell them in no uncertain terms. I mean, just because you can get away with it, it doesn’t mean “you can”.

Tomorrow week, 7pm.
If you are in Dublin, join us in the Glasnevin Parish of Our Lady of Dolours for Winter Songs, followed by mulled wine, minced pies, hot chocolate and marshmallows – and a huge raffle in aid of Caring for Pádraig!

Finally, and coming back to the beginning, the need to say “No, you can’t” – what would you tell someone who had a contract to work 37 hours per week in the public service but only worked 13, spending the remainder of the time working with private clients and charging them high fees?

Exactly! You’d give them the slightly adapted O’Bama quote: “No you can’t”.

And fair play to Irish Minister of Health, Simon Harris, to call this practice “immoral“.

Here is the clip from yesterday’s RTÉ programme – not from the station’s website but directly from the blog, so it can be watched even if you’re living outside the country.

Had a walk through of the FABrík today with two Board members of the An Saol Foundation and two architects. We are all so enthusiastic about this truly fantastic space that it simply has to work. Fingers crossed!

It was my first time at a Coroner’s Court. The Court sat today to determine the cause of death of our dear friend Sara Walsh who passed away on 17 June 2015. We first met Sara in Beaumont Hospital where she shared a ward with Pádraig. Following an ABI in Beaumont she was the first to go to the neuro rehabilitation centre in Pforzheim and made great progress there. Her death left us all devastated, most of all of course her parents and family who have been great supporters of An Saol. There are many things that could be said about today’s sitting and the testimonies given there – none of them would make a difference. Sara will always be with us.

As part of it series “Ten Things You Need To Know” the Irish State Broadcaster RTÉ One tonight showed a programme about brain computer interfaces and brain technology in general. Check out especially the last five minutes or so of the programme featuring Pádraig flying a drone in the Wicklow Mountains!

https://www.rte.ie/player/ie/show/10-things-to-know-about-30003660/10805890/?ap=1

Ready to roll?

In my second job here in Ireland, at around 4.30 in the afternoon, when everybody was really relaxed and getting ready to go into the weekend, I past by a colleague’s cubicle. He looked up as I was passing and said, “how are you?”

What happened next was not what he had expected. Asking someone in Ireland “how are you” is like saying “it’s a grand day today, isn’t it?” This question doesn’t really require a response. It’s like acknowledging the other person and saying “hello”.

Well, I sat down. And I told him how I was that quiet Friday afternoon.

Thirty years later, when someone asks me that question, my response is “Great! Couldn’t be better! And on a day like this!”

Was I a more honest person then? Have I adapted more to my chosen “Heimat” today?

Pádraig went with us to visit two very sick people in hospital today. Each of them is, in their own way, fighting for their life. As he was, four years ago, when we had just arrived in Germany for what we thought were going to be a few weeks, maybe a couple of months, but not more. Those weeks leading up to Christmas and into the New Year, I thought, could push me over the edge. They didn’t. In a way, they prepared me for what was going to come. I was ready to roll…

It’s late and I’m tired after a busy Saturday with no carers. That’s when I do the work of about four people or so who would usually work with Pádraig over a day. For the first time ever, I managed to organise the shower just on my own, with Pádraig helping. Something unthinkable not too long ago. It was also a day when I realised how much progress he has made with eating and drinking. Not just the amounts, or the consistency, but also the confidence with as good as no coughs. This evening, he had the best homemade food anybody could wish for, prepared by our friends and left here to help us getting over what are difficult and complicated times. More than usual.