Two dates for your diary first: (1) This coming Saturday will be the last An Saol Café before the summer (HSE Day Centre, Odin’s Wood, 2-5pm). (2) The annual mass of the Society of St James (‘the camino people’) on 23 July in St James’ Church, Dublin.

We went into a Chines Health Centre and Shop on Parnell Square today and found an incredible selection of stuff, in a really old, unassuming building. We went there to buy a machine that issues small electrical stimulus to muscles, one that Pádraig’s physic has been using really successfully with him. The idea is that we’ll learn how to use it and that he can get the benefits of it every day, rather than just a few times a week. While we were there, we heard that they do acupuncture with people who’ve had a stroke – or a brain injury, something we’d heard about in Germany before. Thinking about it.

Also finally and officially booked and paid for Pádraig’s (and our) now annual pilgrimage to Lourdes. We’ll catch the train, again, from Karlsruhe, close to Pforzheim, for the week-long journey with this really incredible group of people who’d I consider friends by now to this place that must be unique in the world with its profound and deep spirituality along with the most tacky and over the top sense of ‘wonder’.

Pádraig’s diary is filling up!

What a privilege it is to have one, to be able to plan, to look ahead. Ahead!

Like nearly every other house in Dublin we had a barbecue this evening. In our case: small BBQ, big smoke.

I don’t think I’ve ever seen such a small BBQ producing so much smoke and so little heat. Truly amazing. We just about managed to get a burger and a sausage for each of us and it must have taken two hours. By the time we finally ate, the sun had disappeared behind the neighbour’s house and the wind had got chilly.

Like in life – timing is everything when you’re having a BBQ!

A week ago we’s just got back from the Camino. Completing that walk wasn’t easy but it was really enjoyable for so many different reasons. Back in the house it’s not easy either and to be frank: it’s not half as much fun.

The question is: is it ok to really enjoy doing something for a while and then go back to a not-so-enjoyable life? Or: would it be better trying to change something and make every-day life more enjoyable?

At times, i think some radical change is necessary. Just going on every day like the previous is not good enough.

Change is risky and it is difficult. Just like the Camino.

But – it can be fun.

Each time over the past months that I had gone somewhere and came back home, I ‘parked’ my bag in our bedroom with the very firm intention to empty it and store it away. Today, I finally started to empty almost half a dozen bags from different journeys, including those from the Camino. You can now get into the room again without breaking your neck, but there is still a lot of clearing up left to be done.

When I left the big suitcase we bring with us for Pádraig’s stuff when we travel in his room, I couldn’t believe how organised and cleaned up it was. Probably the best organised room in the house. It looked even better as the late afternoon sunlight came in from the windows on the two walls. His is the only room in the house with windows on two walls which makes it the really bright.

When it hit me why it was so cleaned up, so organised, I felt my body flushed out. That feeling of total emptiness and shock I’m not experiencing that often anymore.

Life goes on. We make new memories all the time. Old memories fade away. Until something happens that just shouldn’t.

There’s that room. And it shouldn’t be so well kept. It should be messy.

Microsoft today hosted the Rehab Technology Innovation Meeting, check it out on Twitter: #RehabInnovation, to which Pádraig and I had been invited to contribute. On behalf of the two of us, I talked about the need to support sABI survivors, introduced the An Saol Project, and talked about the obstacles on the way, our camino. Prof Lizbeth Goodman of UCD’s SMARTlab showed a short video of “An Saol on the Sea” as part of her keynote – our dream of a centre that would, under one roof, offer living and rehabilitation space to sABI survivors (and their families), a food court, artistic spaces, a technology and innovation hub, and accommodation for visiting artists, researchers, and therapists.

In the afternoon, we sat outside in the garden, a really nice, ordinary afternoon with phone calls, cold orange juice, and maltesers.

Later, we heard that the Society of St James had invited us to their annual mass on 23 July in St James’ church where Pádraig and us will meet some old and some new friends who have helped us so much to make last week’s walk such an unforgettable and life-changing experience. If you’re free that day and in Dublin – why not join us?

You probably wouldn’t believe it, but stretching out your hand is actually something quite difficult. So difficult that many persons with neurological problems can’t do this even with help.

Here is Pádraig doing it voluntarily. With purpose.

There are things that are hard to believe. There are moments when I thought (and think) that it’s difficult to see what life is all about.

Well, it’s about not giving up. About pushing that chair up that hill. About trying to overcome the most difficult obstacles. About believing that if you really want to do this, you can.

I think everyone who’s been seriously ill has had a visit (or at least the offer of a visit) from someone bringing in the glove, the mitten of Padre Pio. If you are very very sick, you might even have different people offering you to bring in “their” mitten.

On one of those occasions, on one of those visits Pádraig received while he was still in Beaumont, something happened. No miraculous healing or anything like it. Instead, I’ll remember that moment so well because it was then that I started to accept what had happened and was able to begin to deal with it.

Pádraig stretching out his hand, making this incredible effort and making it happen, tells me that he continues to fight the fight of his life. That he is dealing with his injuries and that he is doing all he can to recover from them. An example I’ll follow.

Without imposing any restrictions – what would be the ideal living scenario for Pádraig, myself and the rest of the ‘gang’? In other words, if I could dream something up: what would it look like?

It would be flat. There would be an abundance of space. Wide corridors, wide doors. Super-sized windows, plenty of light. Community areas, formerly known as living rooms, with large screens and great sound system. Cosy, comfortable, mood-adaptable private spaces. Kitchen with a table everybody can sit on. A gym. Large storage space for stuff and equipment when it is not needed. An office for all the paper work, for the communications, the printer. A meeting room where we could plan our next steps.

Guest rooms. Carer and therapist rooms, maybe like small appartments. Where they could stay in the house for periods.

All of this on a large plot with a great outdoors garden, preferably (close) by the sea.

What am I missing?

Now, what would it take to make this a reality? And not just for us, but for anyone affected by a severe acquired brain injury? Together?

A visit to Niall in the NRH. Great to see him, Sandy and Mary!

I’m still pretty exhausted from the walk but will start writing again, properly (whatever that is) over the coming days. Tonight, it’s all about getting to sleep. Good night!

Sometimes, things are just at your fingertips.

What a brilliant control of his fingers! A first!

Russians to the rescue. – Funny thing to say for a native German, but today it really was the Russians who saved the day.

I suppose it had to happen. So just when we were going to leave our accommodation today to walk down to the bus stop to get the bus to the airport, with not that much time to spare, Pádraig’s super chair got a flat.

In no time two mountain bikers from all the way to Russia fixed the problem.Otherwise, we’d have missed the plane.