I’m leaving many things behind, giving much of my life up – that’s what I’ve been thinking when I was looking at my life, my work of several decades. Up to today.

There is a man who has been supporting much of that work over the past years, a man who became a friend. He told me today that life is about changes. That there was a lot I had done, that a lot of that will live on, though certainly different from the way I might have envisaged and different from the way I would have continued that work.

But so what? he said. You’ve got so many more things to do, so many important things to look at. You have decided to spend more time then before with your family. And that’s what it is all about.

I walked out of that room where we had met feeling good about leaving my old life behind.

Because the life ahead is going to be all about looking after each other.

Which is what life really is all about.

Pádraig used his MOTOMed arm trainer today and started to work it himself. It was a huge effort for him, but he managed to do it. The same way, he managed to hold his head up high today, all by himself, when he stood up in his fully height in then standing frame. I know all those things are small and he is not yet able to do them over a longer period, but I can see he’ll be getting there.

This coming Saturday, at the An Saol Café, the last one before the summer, we’ll celebrate life. Tomorrow week, we’ll be on our way to Pforzheim, for another intensive therapy session.

PS: Have you been watching the Eurovision? – I really liked the programme they showed tonight about the Eurovision, just before the competition started. And I like the theme: Celebrate Diversity!

ClareFM yesterday, the BBC today. An Saol is still very much present on the air waves.

Yesterday, Gavin Grace interviewed me for his Morning Focus show on ClareFM. An interview that shows how things have moved on. The Focus now is really to get the An Saol Project on the road – a project very much present in the HSE 2017 service plan published in December of last year, announced by Simon Harris and approved by the HSE in February. Followed by a long silence.

Anocht ar Blas beidh @MBhreathnach ag caint le máthair & deirfiúr Pádraig Schaler @an_saol faoi ‘Action for Brain Injury Week’. Pat and Maria talk to Máire Bhreathnach, presenter of the BBC RadioUlster Blas Irish Language current affairs programme.

Today, for the first time, An Saol became one of two main topics (the ‘other’ topic was Trumps “you’re fired” of the FBI Director, James Comey) on BBC Raidio Ulsters Irish language current affair programme Blas, presented by Máire Bhreathnach. The first time on the BBC. Getting Health Minister Simon Harris onto the show did not work out, unfortunately, but his Department said that they are in close and constant contact with An Saol, developing the project. Mmmmhhhhh.

The more people and the more often we talk about the abandonment of sABI survivors, the better. However, we won’t forget to actually do something for them. First and foremost. Hopefully with the HSE.

I had taken a nap yesterday afternoon. For the first time in a while, I was not too tired in the evening. So I did what I used to do when? and read a bit of a book. Searched for music on youtube. That’s what Pádraig likes, amongst so many other things: Reading. Music.

So why, why is he not getting access to books. To good music.

Because part of his day is wasted by people not working efficiently with him. I think that will have to change. Because the mind needs to be stimulated, like the body.

Today I was also exploring my options in relation to my work at the University of Limerick following the end of carers’ leave at the end of August. It is strange to see that nothing of what I left behind almost two years ago still exists. Maybe, on second thoughts, that is a good thing.

Was interviewed on Clare fm today, will find the recording and put it up later. Also got a call from the BBC in the North who wanted to interview someone about Pádraig and An Saol, in Irish.

Pádraig is fine, continues to improve every day. Went swimming and did stuff with so much ease.

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?