It was hurricane season in the North of Germany and Seosamh and I were waiting in Hamburg for Pat to arrive. First, her flight was re-routed to Amsterdam, then her train was re-routed to Cologne, and when she finally arrived at around 2pm, Seosamh and I had been evicted from the last late night pub we had found, and we were both fast asleep. What a night!

Seosamh visited Pádraig in Hamburg regularly. He always brought little, really thoughtful presents with him. Some presents were rather big, some were so precious, they were put up as a semi-permanent loan. Until we returned it to him when we were all hoping for a bit of a miracle. This time not for Pádraig. But for the man himself.

Seosamh was there for Pádraig. Doing small subversive stuff. He (re-)introduced food and drink to him we wouldn’t have dared to give to Pádraig at the time because we would have been too afraid that he might not be able to swallow them safely. But what can you do when a guest brings along really nice cream cakes or exotic salads and paella prepared by Seosamh’s Spanish friend? And, of course, Pádraig enjoyed that subversiveness immensely, as well as that delicious food.

At times, stories surfaced which, I was assured, were just scratching the tip of the iceberg. They gave a hint of a life I had never been privy to, but explained why Pádraig, on a given morning, once a week, cooked his Irish Breakfast downstairs in the kitchen just after his return home, when I was getting up to bring his sister to early morning swimming sessions. Those nights must have been magic.

Seosamh visited Pádraig, when he had one of those days off from hospital. Pádraig went to see Seosamh in hospital and in the hospice. Yesterday morning was the last time he went to see him. We knew this would be a last ‘slán’, a good-bye, a see you again until the day we meet again, when we’ll have left all our troubles behind.

Last night, Seosamh sadly died. He went ahead of us.

While Seosamh’s physical presence will be very sadly missed, we will never miss his very unique, subversive, kind, caring and human spirit. That will always stay with us and help us through sad and difficult days.

I passed the day in Dusseldorf at RehaCare in some kind of parallel universe. My talk with my friends from Pforzheim went well. Several families came up afterwards and told us about their experiences. One with a son of 28 who had had an accident at 23 – as Pádraig had. Another one with a young son who had had an accident just one year ago. They were still struggling with doctors and a system that seemed to be more interested in keeping the status quo then helping their son’s rehabilitation. They were all horror stories, all too familiar.

On the positive side, I had a chance to talk to companies developing different types of communication systems, building wheelchairs with the big wheel in front so that the chair can more easily navigate more difficult terrain, manufacturing wheelchair-friendly clothes and covers, and building wheelchair-friendly camper vans with ingenious solutions for the bathroom, beds and seating arrangements. While they are pretty expensive to build, they are available at a reasonable price to rent, not more than the rental of a wheelchair accessible small van would cost.

I know that there are people doing stuff like this all the time. But I am still amazed that all this happened in just one day.

An Irish friend told me a story about sharing and making choices.

When they were kids and had to share some really nice food or sweets, and one of them complained to their father that the other had taken the bigger piece, he asked them: “And which piece would you have taken?” – They always answered: “I would have taken the smaller piece, of course!” – He looked quietly at them and said with a slight grin:”Well, then you’ve got exactly what you wanted, didn’t you?”

There are a least two twists in this story and a dozen layers of complexity. Tons of things to think about.

In Germany, the way we did it was that one person divided the portions and the other one had first choice. First choice in Germany naturally meant that you were getting the largest piece, so it was in the other person’s best interest to divide the portions equally because otherwise they would loose out. The idea of taking the smaller portion would not have crossed anybody’s mind.

Not really much complexity. Pretty much straight forward.

Pádraig went to visit his friend in the hospice. It was a tough visit but at the same time   one the reassured him that his friends is not in pain and seemed to be relaxed. In the afternoon he went to a walk in what must have been to warmest day ever at the end of September.

I’m getting ready to get up at 5am to catch a flight to Dusseldorf where I will meet potential suppliers for An Saol, and were I have been invited a talk about the Journey into a New Life. Back late tomorrow evening.

Pádraig went to the CRC swimming pool today. We and the other swimmers and the lifeguard have to get used to each other. But everybody is really helpful and understanding and I’d say that after a couple of weeks we’ll feel at home in the ‘new pool’. The lifeguard/pool manager remembered Pádraig and, this was a big surprise, one of his former coaches, a National Champion and Ireland representative, was there telling Pádraig how happy she was to see him back in the water! Her really genuine kindness nearly, nearly made me sad. Funny how kindness can do that.

We had a big family meal in the evening, with everybody around the table, all eating the same roasted leg of lamb, roast potatoes and vegetables, with home-made apple tart and ice cream for desert. There were close to ten of us. Enjoying the company, the conversation, the food. Feeling alive, being really happy to be together.

While we had some good news about a family member, we also had some sad news about Pádraig’s friend in the hospice whose health has deteriorated dramatically over the past day. We are all thinking of and praying for him.

For the first time in a long time I went out and met an old colleague of mine who I hadn’t met for many years. It’s amazing how we connected after such a long time, not talking so much about the past, but about what we were doing. It was a great night!

It was a great day, with some sad news – a day full of deep emotions.

On my commutes to Limerick I had time enough to read the entire newspaper. Back to front. I was really well informed about the background, not just the headline news, of Irish society, politics and finance. Did it make a difference to anybody? Can’t think of one. It was completely and utterly inconsequential.

That’s what happens maybe not always but very often. There is a disconnect between knowing something and acting on it.

For many different reasons.

Today, I went to the University of Maynooth with a new friend and we walked through the Pontifical University St Patrick’s College which opened its doors in 1795 as the National Seminary. My friend told me that, at the time, it was the world’s largest seminary. Interestingly, it had been built by the English Crown at a time, when Irish priest were educated in Belgium, Spain, and, most importantly, pre-revolutionary France. So they weighted it up: would it be more costly to deal with hundreds of priests educated in revolutionary France or to build them a seminary in Ireland? The choice was clear.

Walking through the old seminary with dozens of portraits of the former leaders of the seminary, hanging from the walls, slightly leaning over those passing by underneath them, was almost surreal. There was, of course, not a woman to be seen in any of these portraits. And the men seemed self-absorbed in their power and might, looking down on their flock.

Their times were different times.

Consultants and health professionals don’t have their portraits hanging on the walls of hospitals or care facilities. But many of them still look down on their patients. Despite all the talk about patient-centred care, the talk hasn’t quite caught up with reality and practice.

Systems resist change. For people, change is, more often than not, threatening.

Change will not happen by itself. It’s up to us. We have to take responsibility.

Pádraig had a great physio session today. He is working on his personal bests, his PBs, to make them not the exception, but the norm. He did more than 20 lift-your-hip exercises while laying on his back. Which was pretty cool. He is also getting much better control over his shoulder movements.

I still have to figure out how to spend more time with Pádraig, looking at the world. Exchanging views about what’s going on. Should those pictures from the past be taken down to make more room for a more equal way to deal with each other?

Spent some time giving more details to Pádraig on what’s happening, especially with his good old friend in the hospice. There was an all embracing sadness. And now doubt that Pádraig understood the gravity of it all.

Back to Saturday morning baking. Back in Odin’s Wood An Saol Café. Back to meeting families and friends affected by sABI.

Today we started the An Saol Foundation’s Policy and Peer Support Group (PPSG). We looked at a charter. We discussed some topics we will address over the coming weeks and months. We considered how often we’ll be meeting. All that information will be made available soon to make it easier for all to join, to provide us with energy, ideas and direction.

In the afternoon we stopped by Pádraig’s and now also our good friend who recently moved into a hospice. There was a camera crew there interviewing him about his times and life. Pádraig and his friend created an atmosphere in front of the camera that was very special. It all happened in Irish which left me a little on the outside though I got the drift. I got the drift man.

Pádraig and us this afternoon visited an old friend of his who is dying. “Everybody knows that’s how it goes.” Which doesn’t make things one iota easier. And I wonder why.

Why are we hanging on to life? Why is life so important to us?

The only answer I can think of is that we live for others.

No matter for how long.

Don’t forget: if you are free tomorrow from 2 – 5 pm, or anytime between 2 and 5 pm, then please join us at the An Saol Café in the HSE Day Centre, Odin’s, Wood, Finglas, Dublin.

The leading causes of death were said to be “drink, drowning, and drowning while drunk” – no, not in Ireland. In New Zealand. Amongst men. 125 years ago. And this was one of the reasons why, so says the New York Times, New Zealand became the first country in the world to give women the right to vote. 125 years ago this week.

Not all were convinced though.

Apparently, one of the country’s largest newspapers, The Press, said “We believe that a very large number of women do not desire to vote. They shrink from having to go to the polling booths on election days. They would much prefer staying at home and attending to their household duties.”

Well, even if they still believe this today, which I don’t think they do, they would not admit to it.

One day soon, nobody, even if they still believe this, which I don’t hope they will, nobody will say in public, or worse, to the parents, or even worser, in the presence of the conscious victim, that it might have been better if he had died in the accident and that spending any money in his rehabilitation would be a waste of precious and very limited resources in the health system. As did a nurse. As did a consultant. Say to us.

Today, Pádraig, as a first, lying on his back, pushed up his hips really high up towards the ceiling, lifting them up completely off the ground. In the afternoon, we did a pretty complicated quiz out of a brain rehab exercise book with him, one he would clearly not have been able to do earlier in the year, and he managed it with flying colours.

Of course, women should have the right to vote.

Of course, one day, survivors of severe acquired brain injury will have the right to rehabilitation.

The incredible thing is that it is up to us to prove this to the health system. As if they did not know already.

Prisoners convicted to life in prison have the right for their case to be reviewed regularly before an appeals board. Because this is their human right. And rightly so.

The same right, i.e. for his case to be reviewed regularly, is not afforded to Pádraig and others in his situation.

That human right still has to be asserted.

PS: Don’t forget: An Saol Café this coming Saturday, 2-5pm, Odin’s Wood HSE Day Centre, Kildonan Road, Finglas West, Dublin 11. Meeting, chat, coffee, cake, discussion about setting up the An Saol Support Group, planning for the rest of the year. All welcome.

We will be resuming our Saturday afternoon An Saol Café in the HSE Day Centre, Odin’s Wood, from 2pm to 5pm, starting this Saturday. All friends and families affected by a severe acquired brain injury are welcome.

With these meetings we hope to start a support group, which will inform the work of the An Sail Foundation and its pilot project.

The first meeting of this year, this coming Saturday, will give an opportunity to meet, to sit down and chat, in a relaxed atmosphere, with some tea or coffee and cakes (which everybody is welcome to contribute), and to plan activities for the remainder of the year.

Please do not worry if you can’t make it this Saturday, there will be more opportunities to meet in the weeks to come.

Feel free to pass on the information about this meeting to anybody you think might be interested to attend. All are welcome.

It will be closed. Nobody knows for how long. Could be six months, could be nine, could be a year. Who knows. We won’t see our friends and we won’t enjoy this incredibly uninhibited dry humour of the lads in the changing room on Tuesdays. Because they will build new changing rooms. And today was the last swim in this pool for a while.

Pádraig did great. He walked across the width of the pool a few times, with some, but not that much help. And – this was a first – he turned onto his chest, stretching out his legs, turning his head to the side, enjoying a whole new experience in the water.

We’ll just have to find a new pool. Somewhere.