“I can’t predict the past which changes, at least in this country, every 40 years”, I heard someone saying today.

Have you ever thought about how the past changes?

When pictures from 20 years ago turned up today, I had to put them aside.

Because I couldn’t stand the pain.

The first anniversary of Tom Petty who wouldn’t back down and stand his ground. He knew there was no easy way out. He knew what’s right. In a world that was pushing him around he wouldn’t back down.

Listening on shuffle to one of the greatest collections of music ever, Dylan sang ‘Idiot Wind‘ which I had listened to many times never really been able to de-ciffre the code that runs through that song. It’s not really a song, more like one of these poems for which he got the nobel prize in literature.

It was gravity which pulled us down
And destiny which broke us apart
You tamed the lion in my cage
But it just wasn’t enough to change my heart
Now everything’s a little upside down
As a matter of fact the wheels have stopped
What’s good is bad, what’s bad is good
You’ll find out when you reach the top
You’re on the bottom

It’s life in just one verse.

Tuesday is swimming day. We’re slowly getting used to the new pool. And the pool is getting used to us. Apart from us, there were three other people in the water today. Quite incredible. Pádraig tried out a new exercise: with his knees up against his chest, and his feet against the wall of the pool, he pushed himself back into the water. Some of those pushes were so strong that we had trouble holding him. He had great fun! Seeing us struggle. And he had a great smile on his face when one of his old swimming teachers came over to say ‘hello Paddy’! She is teaching a group of small kids directly after our hour in the pool and is delighted to see ‘Paddy’ back in the water.

After a bit of a rest, we went to a friend’s house who had prepared an absolutely fantastic three-course dinner. It felt like pure luxury to be able to just sit down and eat and drink and be in good company and chat. Pádraig so enjoyed the meal he was delighted when our hosts offered him another bowl with delicious desert to bring home.

Earlier today, we decided how to proceed with the premises we’re hoping to rent for the An Saol Project.

We’ll be looking for staff, from cleaners, to nurses and therapists, as well as carers and programme co-ordinators to help me run the project. Would you be interested or do you know anybody who might be interested?

“The answer to any important question is yes… and no”, someone said this morning on the radio. Over the past five years most questions I was confronted with had not just one answer.

One of those questions was about life and death. I was in such a panic, I was so frightened, and I felt such a responsibility passed on to me by Pádraig’s doctors, that I wanted to give a firm, clear, unambiguous answer. But that was a type of answer I really could not give. It was a truly terrible time, until it transpired that it was not up to me anyways to give that answer. And not to the doctors either. Especially not up to them.

Pádraig had an appointment in the CRC seating clinic to where he had been referred by his OT. They will be looking at finding better support for his back. And they will be looking for wheelchairs that are a little more road-worthy than the chair he’s got now, which is really just a transfer chair, to be used in doors. They are going to organise another appointment in 6-8 weeks’ time. My guess is that it’ll be Christmas. With luck.

While we were there I had one of those moments when I have to leave. For everybody’s sake.

We were asking, in the physio office, about the lovely hydro-pool in the CRC and were told that it is only for those participating in a special rehabilitation programme. And that it is only for children. And that the physio lead for adults makes only very rare exceptions from this rule. For some adults already in a certain programme. Never for adults like Pádraig. Was the implied statement. “I am sorry to be the bearer of bad news.” She said. I bet you are. I thought. I wanted to note down the name of that physio so that I could contact her and asked the secretary repeatedly for a loan of the biro in her hand to note down the name in my notebook. She wouldn’t give it to me. There was a rule and there was no point in even asking for a biro, never mind for an exception explaining that we were living just a few kilometres down the road, that there was no other hydrotherapy pool around, that it could be really beneficial for Pádraig, that Pádraig deserved any help he could get, and that we would come at any hour of the day that suited them.

Surreal.

Most people agree that money has three main uses: as a medium of exchange (to facilitate transactions), as a store of value that can be transported and is accepted everywhere, and as a unit of account or a common measure of the value of goods and services.

Some people say that money seems to bring out the worst in many people. Because for some reason, many people want more of it, no matter what. Even if they already have more of it than they will ever be able to spend. And in most cases getting more money means taking it from other people.

Few, if any, get rich by doing an honest day of work. No policeman, nurse, teacher, carer,  cleaner, lecturer will ever become a billionaire, no matter how hard they work. You can make an honest living, but if you want to make billions you have to take it from others.

Many of Ireland’s wealthiest people are taxed at a rate below that of average workers,  according to the Comptroller & Auditor General (C&AG). “And 83 of these so-called high net worth individuals, or one in four of the total, declared taxable income of less than the average industrial wage, which is just over €36,500”, according to the findings of the report quoted by The Irish Times a few days ago.

The Irish Times says that “just 10 taxpayers from the group were responsible for 85 per cent of the €473 million income tax bill owed in total, meaning that many of the rest paid relatively little. Some declared little income for tax here, presumably due to tax residency elsewhere, while other successfully used a range of credits and reliefs to shelter income from tax.”

You couldn’t blame these rich people to look after themselves. In the same way that you couldn’t blame a plumber getting paid in cash on not declaring his income. Or those claiming unemployment and other benefits when they really are not entitled to those benefits.

Who one could blame is the government and its administration for not establishing and then enforcing rules that would prevent people taking advantage of others, in this case those who do an honest day of work and pay there taxes. Who one could blame is a society that not only allows but in some cases seems to encourage those taking advantage.

As an example, the Irish billionaire JP McManus’ “generosity is fantastic and he should be lauded for it”: the leading racehorse owner shared €3.2million with GAA county boards to support gaelic sports. Yet, the same JP McManus ‘has paid no tax in Ireland for 20 years‘.

Why does all this make me think?

Because if someone, like Jamie Sinnott around 2000, requires special schooling, they should not have to go to the High Court to secure this right. Because if someone requires ongoing, life-long therapy and support because of an accident they should not have to struggle to secure this right. Because the State says it has no money to pay for it.  These rights should not depend on families and friends having to organise cake sales and raffles in order to secure funding for these, ultimately, life-saving services.

In the end, it is up to us and to our decisions, to our preferences. Do we allow people not to pay their taxes to the communities that they live in and do we allow that persons with catastrophic injuries are left behind, are left to die, because ‘there is no funding’?

I’m telling you: these are not tough choices. Especially if you are affected personally.

Am I ranting on?

Too many emotions. No words. A funeral. Never to forget.

It’s a long, long road
From which there is no return
While we’re on the way to there
Why not share
And the load
Doesn’t weigh me down at all
He ain’t heavy, he’s my brother

I don’t know how she did it, but Seosamh’s sister sang all the verses of this beautiful song today at the end of his mass. And it’s a song we should remember. All. Brothers. Always. Forever.

Another busy day. With some really somber moments.

Meeting, telephone calls, discussions, emails. All terribly important.

Then a trip with Pádraig across town to his friend’s Seosamh’s removal.

I have been at many funerals. Too many recently. Never had a removal been as fitting as Seosamh’s. It must have been the spirit of the man himself who turned this terribly sad occasion into a (temporary) fare thee well gathering, oozing with style. His family really managed to capture what Seosamh has been all about. Up to the detail of the ‘Leonard’ hat in his hands. I will never forget this afternoon in Seosamh’s presence.

We’ll be getting up early tomorrow morning for the funeral. I cannot imagine that it will be anything else but a celebration of the life and the everlasting presence of a beautiful spirit.

This was one of Pádraig’s very best friends. That they were there together this afternoon and that Pádraig will accompany his body on his last journey will be terribly sad, but will also be an affirmation of life continuing, of life being lived, of feelings and emotions. And it’s not so long ago that many people were convinced that none of these were ever going to be experienced again by Pádraig

They were wrong.

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?