A good friend sent me pictures this morning from way back when we were ‘young and fit’, he said. They were from the day of the Dublin marathon we both ran and finished, he in a very respectable time, myself happy to have finished it.

Earlier this year, I had registered for this year’s Dublin marathon because I feared it would sell out as it had for the past couple of years. When I registered, it seemed like I had plenty of time for practice and training. And then, during the summer, there was no time at all. In fact, the summer was so intense that when it was over, I got the flu for close to two weeks. Now, I have been coughing for two weeks with no chance of even walking the 42 km tomorrow.

Nonetheless, I went to the RDS to register and collect my racing bag. What a mistake. I had felt bad about not being able to get up and running before. But when I was there with hundreds of people being all excited about their big race tomorrow, it made me feel worse. Because I really wanted to do this tomorrow. Just that tomorrow won’t be my race day.

I’d love to say that there is a valuable lesson in this that I’ve learned. Something like that you have to accept that certain things will not be possible, no matter how much you would like to do them or how much you would like to see them happening.

The reality is, however, that there days I find that hard to accept.

I talked to a few families today about that recent RTÉ Investigates programme. They all told me about their own very similar experiences. And they all said that they don’t know how Patrick Fitzgerald manages to deal with the situation without going mad.

I’d say not being able to run the marathon would be the least of his worries. More likely, it would not be one of his worries at all.

I am grateful that there are people like Patrick Fitzgerald and his family around to raise awareness about the lack of appropriate care and rehabilitation for persons with a very severe acquired brain injury.

Pádraig cast his votes both in the referendum and in the presidential elections. The referendum vote was obvious choice for him and pretty straight forward. Almost too predictable to even mention. His vote in the presidential elections, by contrast, was more complex and involved the voting for his number one and for his number two candidate.

It was wonderful to see how normal it was for him (and all people in wheelchairs) to exercise their right to vote. This was inclusivity in action! There were even specially adapted booths and really helpful staff.

Well done, Pádraig!

Not in a hundred years… but once. Is cearta daonna iad cearta teanga agus tá cothrom na féinne tuilte ag lucht labhartha na Gaeilge, stated the member of the British House of Commons, Liz Saville-Roberts, a member of the Welsh party Plaid Cymru, yesterday in Irish, for the first time in a hundred years, in the British Parliament: “Language rights are human rights, and the Irish speaking community are entitled to equality”. She called on the UK Government to uphold its commitment to introduce an Irish Language Act if power-sharing institutions are not restored within six months.

Of course, they have not done it because they are dependent on the votes of the DUP from Northern Ireland who are vehemently opposed to the act. Human rights meet the pragmatics of realpolitik.

Tonight, Ireland’s best investigative TV programme, Primetime Investigates on RTÉ One, will be a programme on ‘troublemakers’ and how the official Irish health system deals with them. “Daring to challenge HSE’s comment, complaint service.”

One of the cases that will be reported on is that of “retired Dubliner Patrick Fitzgerald, a former trade union negotiator, (who) currently finds himself locked out of Cherry Orchard where his beloved wife Anne is a long-term resident in the Sycamore Unit.

Anne sustained a life-changing brain injury after slipping on ice nine years ago when putting out a wheelie bin. It is a random, catastrophic tragedy of such mundane origins, yet it has changed life irrevocably for the Fitzgerald family.”

I know Patrick and he has in the past attended meetings of the An Saol Foundation. He  is a gentle man who, supported by his daughter Frances, is doing his best to make sure that his wife receives the best possible care.

Following his complaints about lack of adequate treatment for his wife in Cherry Orchard, the HSE, instead of addressing and investigating the complaints, has now restricted visiting hours of Patrick to one hour, Monday to Thursday, and they place a security guard at the door during his visits.

By comparison: “The Irish Prison Service is committed to making visiting a prison as easy as possible for visitors. The Prison Service understands the importance of helping prison maintain and develop relationships with family and friends and is committed to enhancing where possible, and subject to appropriate security considerations, the visiting facilities and regimes for prisoners.”

After tonight, the programme will be available on the RTE Player on the web.

Pádraig is doing really well and out for a concert in St. Patrick’s College (DCU) while I’m staying in trying to get rid of my cold. I am miss spending more time with him but, at the same time, really do not want to pass on my cold and cough…

The German word for “centre” (Mitte) and a spiralling circle around it. Nothing pointing in any particular direction. It was a happy moment today when I saw this piece of art in the office of the man in charge of the Aftercare Centre in Augsburg, the (charitable) “Nachsorgezentrum” built by Mr Schuster, a few years after he had built the Therapiezentrum in Burgau to cater for persons with acquired brain injuries who had left hospital and early neuro rehab, but could not (yet) live by themselves or at home.

Check out the ingenious pieces of art, made from simple wooden palettes, in the centre’s workshop.

I had planned a visit to the centre for the past few years and this afternoon it finally happened. It is the most amazing purpose-built place to live in for persons with an acquired brain injury, with only one other similar centre being around in Germany, in Bad Tölz, in Germany’s deep South, deep Bavaria. And none I would know of in Ireland.

There is an ‘old’ part and a ‘new’ part, and both are outstanding. However, it is the new part that really shows off the skills, experience, and passion of the people (really: the person) who planned it – and who I met today.

I never knew why places I had visited previously always reminded me of nursing homes. There had always been a ‘clinical’ air about but I had not been able to put my finger on what had caused this, even when the people running them had the best of intentions to create a homely feeling. Today, all of a sudden, I realised why: because all those other places had long straight very functional corridors, and many of them had been painted in ‘calm’ brownish or clinical white colours. Here, there almost were no straight lines. the corridors were curved or the straight lines were interrupted by alcoves and open spaces – all in bright lively colours, with some funky ‘accessories’ interrupting and breaking up the otherwise bare walls.

Someone once told me (and must have told the designers of the centre in Augsburg) that you can never have enough space if you are using equipment and wheelchairs. There were not just art rooms, computer rooms, therapy rooms, quiet rooms and meeting rooms – there were also rooms to store equipment and a ‘garage’ to park (and recharge) all sorts of electrically powered cycles and chairs.

On both sides of the house was a really wide balcony, allowing a wheelchair user to go for a ‘walk’ and get a bit of fresh air – and even to pass another wheelchair user coming down the opposite direction. The house has living units each for about six persons having their own, large en-suite room and sharing a sitting area and an open plan, especially adapted kitchen. Each unit has been built so that it could, in the future and if needed, be used for other purposes involving persons requiring help and assistance.

The philosophy of the centre is that people do or get involved in everything a healthy person would be doing, such as cooking or washing their clothes. There is no pool in the house, so that people who could benefit from aqua therapy “have to” get out of the house and go to the pool – like a healthy person would do. This is also the reason why the building is very close to the city centre and all of its amenities, from public transport to shops and cinemas, but also a zoo and a small botanic garden.

What was equally exciting as visiting and seeing the centre at work, was the long conversation I had with the person who is in charge of the place, and to learn about his approach. For example, they have set up three different therapy praxis’ (physio, OT, and SLT) which not just serve the residents in the centre, but also persons in the community who require access to their highly specialised neuro rehab services. That way, they make the best use of their staff and, at the same time, generate an income for the centre (which helps them covering their running cost and paying staff).

Talking about running cost: we spent a good while going through a top-level cost estimate and reached the conclusion that the average amount currently paid for by the HSE for home care packages or to nursing homes would be sufficient to cover the daily rate we would have to charge in Ireland for a future An Saol Centre (with residential, respite and day units).

I have the feeling that, looking back in a few years time, I will remember this day as the day that plans for a permanent, purpose-built centre in Ireland for persons with a severe acquired brain injury took shape.

And here is what I missed while I was away: Pádraig went to the Hugh Lane Gallery which does not only have beautiful works of art (and some weird ones), but also a café offering beautiful cakes. Who could enjoy art on an empty stomach, I ask you? Sensible as he is, Pádraig decided “cake before art” and went for it in the proper order.

Just for those of you not familiar with the pieces exhibited in the Gallery: what looks like  an auld brown wall carpet from the sixties is, in fact, a piece of art by Sean Scully called “Light/Alba”. And the second piece on the pictures above , the one that might remind you of baby Jane, is, in fact, a piece by Niamh McCabe and it is, I’d never have guessed it, a dead painted bird. I have it on a reliable source that Pádraig was wondering whether Niamh killed the bird herself so she could paint it – or whether she had a cat who collected birds for her…

What do you think?

(You’ll have noticed that I had time on the plane back:)

It’s not the ships passing underneath the bridge, its the bridge passing underneath the ships. Sounds mad?

Well, the bridge, officially opened today by Chinese President Xi Jinping, is the world’s largest bridge. Across 55 km, it connects Hongkonk with Macau and the Chinese mainland. It took nine years to complete and cost US$20 billion.

For comparison: the shortest distance between the North of Ireland and Scotland is just 12 miles or less than 20 km. – Although, to my knowledge, nobody has ever considered to build a bridge here.

What I found most interesting about this bridge is, and here comes the “mad” bit, that a 6.7 km stretch of it is not a bridge at all, but a tunnel between two artificial islands, designed to allow ships pass freely through (above) the path of the bridge, well: the tunnel.

Seems they couldn’t make up their mind. Bridge? Tunnel? – Well, let’s do both. There’s enough of a distance not to exclude any of those possible options, eh?

Crazy people.

Personally, I’ve always liked the idea of a tunnel. People are always talking about ‘bridge building’, not just between places, but also between communities, political parties, countries and their people.

As we know, bridges tend to collapse. Have you ever heard of a tunnel collapsing? No.

Last time I came here, I drove and needed ferries, bridges, tunnels and a lot of time to get here. Today, it felt like I was beamed here.

Tuesday is, of course, swimming day with Pádraig. Thankfully, I’m feeling a bit better today, still not great, but good enough to get into the water. I don’t think I could ever explain how happy I am when I see Pádraig enjoying floating around, kicking his legs, walking across the pool, standing, with very little help from us, on the site of the pool, holding on to the wall. For him, it must be one of the most liberating experiences of the week. To float, to control his movements with so much ease, and to have fun. Today, we were practicing the back-crawl start, pushing yourself away with your feed from the wall. It was fantastic!

After swimming, I got a lift to the airport and now, just a few hours later, I’m back in Burgau for the night. I’ll be meeting a few people tomorrow in the Therapy Centre and will be visiting an Aftercare Centre (also built by Mr Schuster and his foundation) in nearby Augsburg, before returning home in the evening.

It still amazes me, how travel has changed. And, in a way, I wonder, whether stuff like bridges and tunnels are not artefacts of the past….

Businesses have to expand. The economy has to grow. Our cars have to get bigger. Our holidays more exotic. Our houses more lavish. The food fancier. Our clothes more extravagant.

All pointing in one direction: forward.

What about standing still for a moment? What about doing nothing? Rest? Allowing the busy-ness of the world surrounding us do their thing while we walk, not ahead this time, but around in a circle?

One story I’ll never forget it that of a young woman who had travelled India for three months. She was completely exhausted and decided to do some kind of mindfulness/yoga course in Sri Lanka to relax. One of the first exercises was to sit and do nothing for five hours. Nothing.

She said that she found those hours more difficult than anything she had encountered during her three-months travels across India. And this was just the first of many similar exercises.

I have been thinking of this in the context of therapies. I have observed this tendency to celebrate achievements following exercise/therapy: look what Pádraig can do! Lift his pelvis off the floor, push his wheelchair across his room, hold his head all by himself. All of this is great. All of this is necessary.

But only if it has a purpose and a meaning. Only if it is not done ‘per se’. Only if it not done just for its own purpose.

What is happening in therapy must have a meaning for Pádraig’s life. It must enable him. It must allow him to do something he wants to do. At the centre of everything, the focus, must be Pádraig feeling that he is alive and that he lives with us in community. It can never be “look what Pádraig can do” but must always be “brilliant what you can do”. Never a performance, always integration.

Pádraig has figured out with us how to survive his catastrophic accident. Pádraig has figured out with us how to improve his physical condition using therapies. Now we have to figure out how to make life together the best it can possibly be (while not forgetting the need to survive and the need to exercise).

And for that, we might, for a moment, have to stop and pause and go around in circles for a change.

Tonight it’s all about joy and beauty and this spectacular photo from a walk along the Royal Canal.

There’s nothing to be said or added.

In a little bit less than a month’s time, I’ve been writing this blog for five years. Every day. For many different reasons.

I’ve been hardly out of bed today so I had a bit of time to think and feel without the pressure to do something or the other.

At the beginning there was the disbelief, none of what I was hearing could be true and I would wake up one day and it had all been a bad dream. In fact, there were days when I woke up and thought that this is what had happened.

Then there was the urge to do something and the belief that if only the right thing was done all would change. Dramatically.

There was the outrage when we were told that Pádraig’s “pathway” was to lead him into a nursing home, on a minimum maintenance programme.

There was drama and heartbreak and almost unbearable intensity of life.

There was progress that no-one expected.

There is progress, a joy of life, an incredible bond and sense of purpose in life.

Love.

What else could I share here?

The world is made up by gazillions of details. No matter what world you’re living in. And when I listen to someone beginning to talk about the details I get this feeling that nothing will ever get done. I might have mentioned what a very good friend of mine once said: If you really want to stop something, don’t oppose it. Add to it enthusiastically. Add detail. Soon the whole thing will become unmanageable and it will be abandoned.

Reality does not conform to detailed plans. Checking on detailed compliance soon becomes an exercise “per se” without any meaning, incapable of dealing with variety of life, impossible to cater for variance and ‘exceptions’.

When I was still a student, I got a job teaching German to immigrants. Easy. I thought. Nothing more straight forward than teaching something you know doing (speaking) pretty well. Wrong. It was the most difficult job ever. Because I was trying to teach German the way I had learned languages, I was trying to teach rules (with dozens of exceptions) to people who had never learned a foreign language, and couldn’t care less about grammar, the minute details of gender, articles, and cases. Their needs were different from what I was teaching. Sounds obvious now but when I was doing it, it took me months to learn from my students about their needs.

Change gets lost in details. It comes in big strokes. Martin Luther’s dream was about the big issue. Revolutions are about big ideas, they drown and get lost in day-to-day bureaucracy.

I am not feeling at ease drawing up dozens of procedures based on existing practices for the An Saol Project day centre that is going to change the way we support persons with a very severe brain injury. Because if they are based on what exists, they will not bring change.

Rome was not build in a day. Slavery was not abandoned with the stroke of a pen. Equality will not be achieved overnight. We will need what the Germans call a ‘long breadth’. Persistence.

“We will never give up” is easier said than done. Enthusiasm and ‘long breadth’ are at times difficult to combine. But – if it was easy, someone would have done it.

I’m having a cold, having started to run again a bit and having started to go swimming a little. Hopefully, that I’ll get over that as quickly as I’ll be dealing with the gazillions of details of procedures and planning and fire regulation and disabled access and health and safety and infection control and minimum door widths and maximum distances. So I’ll have more time to spend with Pádraig.

The wound left by the PEG has been healing really well. It will leave a trace and a reminder of it on his stomach, but it will fade away. Together with the memories of constant pre-digested drip feeding, eliminating the very sensation of hunger and thirst, shrinking the stomach and eliminating all pleasures associated with food.

Yesterday, a father who attempted to murder his four children was jailed for eight years. According to the Irish Independent,

The judge said among the aggravating factors was the “narcissistic element” of the offences where the man had shown a “complete lack of respect for the children’s autonomy”, believing they would be better off dead.

A nurse in an Irish hospital, when we were standing beside Pádraig, had asked how the accident had happened and then said that it might have been better had he died. Knowing, had she thought about it, that Pádraig could hear her and that we had been fighting together for his life for more than two years.

Compare.