If you think about it: there is the scandal of utter neglect of young persons with severe brain injury. There is no question about the fact. There is no question about the scandal.

But an existing scandal only becomes a public scandal when it touches and penetrates the public mind.

How can we make that happen?

We will cross the rubicon when families speak out and say it the way it is. Nothing more and nothing less. In public.

Only then will public outrage prevent professionals from pressing families to accept the ‘reality’ and ‘get on with it’. Only then will they stop putting families under pressure, driving them to tears.

It’s a public matter and we need to make it public. Res Publica Res Populi. Right?

I remember that summer in Dublin, and the Liffey as it stank like hell, and young people walking down Grafton Street, everyone looking so well…

What an iconic song! What an iconic swim. One of the most famous in the world. The only one going right through a capital city. Pádraig swam this some years ago. Today we walked along the river towards the Customs House, following the swimmers, negotiating our way around a true obstacle course. Dublin’s Quays are not made for wheelchairs.

It was a brilliant day, meeting ‘old’ swimming friends Pádraig had not met for more than three years. Man, life’s worth living but it’s also pretty tough at times. But that’s what it’s about. And the people that are with you all the time, be they fabulous or tough or sometimes both.

After the swim, Pádraig was off to a surprise party for one of his best friends who has decided to hand in his job and head of to Nepal. He’ll get rid of his phone, his laptop, and start writing post cards and letters again… I had to think of Into the Wild. One way tickets. Burning what you own and what is so precious: money, photographs, driving license, passport. Nothing left really to worry about, at least not any possessions. Free the mind to focus on what matters.

Sounds good to me, to be honest.

It was a German (!), an old friend from Hamburg (!), Klaus Voorman, who designed the Grammy-winning album cover (“album cover?”, I hear you ask? “What is that?”).

The music was (partially) inspired by the Beach Boys’ Pet Sounds – which had (partially) been inspired by Rubber Soul. Throw in a third album, Bob Dylan’s Blonde on Blonde, and his response, in 4th Time Around, to Lennon’s Norwegian Wood, and you have three of the best albums ever recorded, all being released in one year, and Revolver on this day, 50 years ago.

Pretty complicated, right? And no, I’m not a walking music encyclopaedia. It took me hours to put that puzzle together today. Really.

“Not the best use of your time, Reinhard, if you don’t mind me saying”, you might say. “Haven’t you got better things to do?” – and I wouldn’t entirely disagree with you.

Only that doing these un-productive, pretty useless, things from time to time really make our life worth living. If we were just concerned about being productive all the time we would become machines. What makes us human, what makes “life” life, and not just existence, is doing things, at times, that are un-productive.

In fact, I suspect that the sometimes exclusive focus on productivity and metrics and turnover, the “University of Enterprise”, is leading us into a world where life is only valued if it produces a return on investment.

What kind of life would that be?

One of Pádraig’s best hours in the week is that of his Music Therapy. One of my best hours was sitting in on a session. There were no measurable things happening, as far as I could tell. But there was real magic in the air and an engagement that was incredible. Worth living for.

Life is worth living. Even, or maybe especially, if the outcome is just the pleasure of living it.

Wouldn’t you agree?

(And being able to listen to 50-year old Rubber Soul, Pet Sounds, Revolver and Blonde on Blonde is one of those pleasures of life.)

I’ve been asking myself whether something utterly outrageous can be so desperately serious that it turns into utter fun. Could I tell the uncut version of hospi-tales in the laughter lounge and become such a run-away success that it would bring in the €1.5m An Saol requires for its 3-year neuro rehabilitation pilot project? Would this be a more efficient use of my time than trying to get politicians to listen and act?

There are stories I’ve been told, conversations I’ve had, phone calls I’ve received, situations I’ve lived through in the past years that you couldn’t make up if you wanted to. So off-scale and absurd that told out of context they could have people lying on the floor laughing their heads off.

Only that, of course, none of them are really funny. They are dead serious.

They are so dead serious that you wonder how there isn’t a huge outcry, headlines all over the papers, people ringing into their favourite radio stations, politicians calling for resignations and commissions of investigations, and investigative journalists doing what they do best.

They are so dead serious that it is inexplicable that they reflect ‘accepted’ every day practice in a civilised and prosperous society.

We really do need our heads examined.

PS: Pádraig once told me not to tell jokes. Ever. Not alone and, especially, not in his presence. Unless I wanted to really embarrass myself. Germans are just not funny, not in German, less in English. He was, no surprise here, right, of course. On the few occasions I’ve tried to tell jokes people kept looking at me in expectation of that punch line that had long been told. In this case, though, I wouldn’t try to tell jokes, I’d tell it how it is.

There were so many visitors here in the house today, it was impossible to keep track. Carers (PAs), a couple of therapists, two reps, a couple of Pádraig’s friends, a brilliant cooking teacher, and a few ‘regulars’.

I’ve been trying to write about important stuff here for the past few days, or is it weeks, and I just don’t manage to do so. Because by the time I sit down, it’s so late that I can’t really concentrate on anything anymore, can barely type and keep my eyes open. At times, my fingers jam on the keyboard and the keyboard freezes in which case I have to start all over again. It can take a long time to get a sentence together, twice that to get a sentence together that makes sense…

I won’t be able to write what I wanted to write about this tonight, but at least I will mention this:

Check it out here and join us on 13 August when we’ll climb Croagh Patrick. Start your fundraising campaign in support of the An Saol Project!

Finally, An Saol is not only looking for Physios and OTs, we are also looking for a “Programme Co-ordinator” who could help us develop the organisation – please get in touch if you know a suitable person (or persons).

Samuel Beckett once said, “There’s man all over for you, blaming on his boots the fault of his feet”. Makes me think of our health system… But!

There’s nothing to blame in relation to these runners. Because these runners are no ordinary runners.

They are extremely cool. They are brand new. They are so comfortable. They are very big (size 50, European). They fit like a glove. That’s the obvious. Stuff you can see for yourself.

But what makes these runners real special is that they were picked today out of runners and shoes lined up in dozens of shelves. By Pádraig.

By Pádraig, who was not supposed to ever stand again; not be able to have opinions and preferences; not be able to see and recognise; not to like or dislike stuff; no be able to communicate his preferences.

Tataaaaa.

Well, you were wrong, lads.

Life is about making choices. And if you can pick your runners… 🙂

When you can’t use your voice as others do. When you can’t form sounds that represent words that are widely understood.

That doesn’t mean you don’t have a voice. It doesn’t mean you can’t communicate. It just requires a bit more time and patience by those around you. They have to look out for signs they never knew existed. They have to learn to hear the other voices they aren’t familiar with and which are harder to hear. Doing this is both very very difficult and extremely rewarding. Both for the speech-less person.

There is another kind of speech-less-ness. When common sense and rational arguing don’t work anymore, when I get this feeling of being powerless in the face of ignorance or fear. That makes me speech-less.

In either way, being speech-less doesn’t mean you don’t have a voice and an opinion you might want to share. You just do it in a different way

Great day today for Pádraig – we took it easy in the morning, it was a Bank Holiday after all! And then a visit to his grand aunt and a shopping trip to the big Dunnes Store, following by a lovely reading in Irish. Life’s worth living!

We’ll be missing the Cloone Show tomorrow but we saw all the preparations going on today for what is being billed as the biggest, brightest, and most exciting agricultural shows in the West of Ireland! What this really means you’ll only understand once you’ve been to the place. Many years ago, when Pádraig and I were driving to Cloone, he asked me whether we were in the ‘Middle of Nowhere’ – and that was just on the way to the place!

Down the road…

Up the lane…

At “Pádraig’s Bridge’

Getting ready for the Show

To be truthful, it is one of the most beautiful villages in Ireland. Really nice. Really calm and relaxed. Except for tomorrow. For the Agricultural Show.

Next years, we’ll go to Leitrim for July and August. On Holiday. And to enjoy the Agricultural Show!

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The first night here I couldn’t sleep.  It was too quiet. I felt really uncomfortable. It was too dark. No street lights. No traffic. No people laughing and shouting on the street.

I got used to it. At times I wondered why we didn’t live here.

Now I wonder whether that will ever be an option. Pádraig really enjoys it here, though everything is beyond basic. Could that be the attraction?

Have you experienced –

sense deprivation?

physical – no smell, no touch, no taste, no control, …

mental – logic, truthfulness, compassion, understanding, common sense, …

A sense-less world? Even for a short period but sufficiently tough and unforgiving that you will remember forever?

If you have experienced sense-less-ness you are ready for change, ready to do what it takes to restore sense and senses. – If you haven’t we should help you to experience it. Because it’s worth it. Your life will not be the same afterwards.

Pádraig is taking big steps forward. When standing in his stand-up bed, he can – when we ask him – relax his left leg, stand just on his right leg, and then straighten this left leg again; and do the same with his right leg. He can lift up a long exercise stick with his two arms a couple of times. Today, he moved his legs to one side when Pat was trying to turn him in his bed, just to help her.

Support for An Saol and the An Saol Project is picking up. There are a number of fundraisers about to happen, incredible initiatives just based on the efforts of individuals who believe that An Saol needs to happen, there is no alternative.

Bringing sense to a sense-less world!