Pictures can say more than a thousand words

More pictures from Pádraig’s Christmas party tomorrow!

I read the news today, oh boy. And the bit that caught my attention was about the Oxford dictionary choosing its international Word of the Year: “Youthquake”. Apparently, it beat “Antifa” and “broflake”. While two out of three ain’t bad, as we all know since Meatloaf told us so, one out of three is most definitely. I had heard of “Antifa” but had to look up “broflake” and the winner, “Youthquake”. (When I did, I learned that this is exactly what the Oxford dictionary intended me to do, i.e. to become aware, or to remind me, that this word exists, what it means, and, maybe, to become a little bit inspired by it.)

Another bit of news, that didn’t make it onto the Irish news editors’ radar, was that the first kiss hit the screens 50 years ago this week. Imagine, just 50 years ago interracial relationships were still a taboo in mainstream media. Isn’t that incredible?

Another incredible bit of news, in an extremely positive sense this time, is that I had a meeting with a film production company this afternoon who were so inspired by Pádraig that they had decided to do a documentary on Pádraig’s new version of the original “Dreamboat”: the development of life and living and rehabilitation spaces for persons with severe acquired brain injury in the FABrík!

All in anticipation of our grandchildren looking back in 50 years time on what we achieved in awe but wondering how on Earth it had taken us so long to recognise that persons with an sABI have the same right to a decent life, with everything that goes with it, as the rest of us do.

My feeling is that this will bring the project into focus and provide a bit of accelerator. Like a youth quake:)

PS: If you have a few minutes to listen to a great song that brings back memories from times when all and everything was possible and life was to last forever, listen to You took the words right out of my mouth – it’s one of these songs you don’t sing in the shower, but in your car at the top of your voice when nobody hears you… or with your friends at a crazy 80s party.

I only heard great things about Pádraig’s morning sessions, with a physio standing in for his ‘normal’ one who is away and an ingenious PhD student working with him on brain control ‘stuff’. All that while I was away on a course with the HSE finding out more about the details of 2018 Service Agreements. – All in all, I think a drew the short straw this morning:) Although the good news is that we are now almost at a pint where An Saol’s pilot is about to start in earnest!

The poster – or is it an inform? – was tweeted recently by the World Health Organisation (WHO). It made me smile. Imagine: there is a right to health which means that there should be universal health coverage that is affordable, timely, of good quality, acceptable and appropriate. Without being cynical, I’ll put all of that on the list that they guy with the big white beard is going to check twice…

Somebody must have done a bit of work on our behalf because today, I received a long, a really long, personal letter from the Irish Minister of Finance in which he tells me that he has checked with his colleagues, the Minister for Health and the Minister for Disabilities and that they have assured him that work is on the way to provide better neuro-rehabilitation services. He invites me to contact him to clarify any questions I might have in relation to this.

I surely will. Contact him.

After all, he’s the man holding the key, well – the purse strings that would allow us converting the WHO aspiration into reality.

Well, Hello Dolly! She ain’t quite like Barbara Streisand and neither does he have any resemblance with Louis – but both were really really happy together when Dolly came over for a visit with Pádraig’s music therapist. I felt so happy just watching the two. And it made me think again about the beautiful companionship of a (therapy) dog…

Hello Dolly is, of course, not just a song, but a full movie! Watch the arm-swinging dance at 1:07 and the kicks at 1:34 in the original movie or, if you prefer, Louis in 1965 Berlin with his All Stars and the incredibly swinging version of this absolutely impossible, incredibly dated, totally non-pc song. You’ll love it!

It wasn’t the full Padmasana but he got pretty close! We have been doing exercises with Pádraig on a floor matt for quite some time and the other day we checked out whether he was ready for some yoga. He was! Isn’t that amazing?

Tonight, the Board of the An Saol Foundation heard about their architects’ plans to develop the premises it has been looking at since the summer. It also considered some research collaboration with a Dublin university. There was a real sense of progress and the beginning of a development that will change the way we will look at rehabilitation for survivors of very severe acquired brain injury.

PS: As a follow up to last night’s post. Check out the definitive version of the brilliant Smoke on the Water by Deep Purple. Turn up the volume, let down your hair and go with the music. No matter what we get out of this, I know, I know we’ll never forget. (With a legendary hammond organ solo by John Lord at the end.)

I’m learning to fly but I ain’t got wings. Some say life will beat you down, break your heart, steal your crown.  So I’ve started out for God knows where, I guess I’ll know when I get there. I’m learning to fly.

It took me ten minutes of Google time tonight to find the song that echoed in my mind today when I received the absolutely brilliant, almost incredible news that Revenue (and what could be more boring than ‘revenue’?) had awarded charitable tax exemption to the An Saol Foundation, the last big barrier for signing a service level agreement with the HSE for our three year pilot project. I was looking for this song because it encapsulates today’s core message in brilliant lyrics, with some stunning guitar solos.

It’s a message to Rikki, to not loose that number, because it’s the only one he owns and because he might use it when he feels better…

There are a few versions of this brilliant song on youtube, the one I like best is the live version from Steely Dan’s concert in the Rainbow Theatre, London, from May 1974. And it is so full of vitality that it’s contagious, so different from the original cocktail lounge-like version. It makes you nod your head, move your feet, waggle your shoulders, swing your hips and gets you ready to send that letter to yourself. With that number:)

As it happens when you’re on youtube, one song leads to another. So here’s another about Learning To Fly (with Tom Petty and Stevie Nicks): Well I started out down a dirty road, started out all alone, and the sun went down as I crossed the hill, and the town lit up, the world got still.

Finally, if you want to get the day going, watch Erich Slowhand Clapton and a band of middle-aged men playing Layla in Madison Square Garden in 1999. There’s nothing like it.

Tonight, I’m telling myself: Rikki, don’t loose that number. Because I’ll learn how to fly to get to God knows where. And who knows? I might find Layla and make the best of the situation, before I finally go insane. Don’t say we’ll never find a way and tell me all my love’s in vain. Dada dada dada daaaa, daaa daaa daaa daaa daa….. Into the night till the morning comes and with it a new dawn. CHY21684. I’ll never loose that number!

What a difference it will make in Pádraig’s life and that of others in his situation. None of us can even imagine.

“Mr. Franz, I think careers are a 20th century invention and I don’t want one.” (Into the Wild) I love this quote and I love the attitude. Here is a young man who does not want to be sucked in to the establishment. Bought by the promise of more money, more possessions, of power, influence, and security. He doesn’t fight the system that has created the concept of a ‘career’, he doesn’t try to convince people who believe in it, instead he say: I don’t want one. You can have it.

Isn’t that so much more relaxed, so much more zen? So much less draining?

Today we visited a very sick person in Blanchardstown’s St Francis’ Hospice. It reminded me that doing things right is possible. It is a place that is so good you have to pinch yourself to make sure you’re not dreaming.

I sometimes pinch myself to remind me that what is happening to me, to us, is real.

I’m lying down, on my back, looking up, under a clear sky in the night. The stars above me are shining. I can see satellites flying across the dark space above me like bright stars, coming and going and going again. There are millions of stars so far away that they looks like lit-up fog covering large areas of the black blanket covering the earth. It’s so quiet, I can hear the wind. I can feel the wind. It’s a light breeze that is caressing my skin.

There are no phone calls, no emails, no whatsups, no texts. There is nobody coming and nobody going, there isn’t anybody there.

Time is standing still. What was there a few hours ago has gone away. No fire-fighting, no need to react to anything or anybody. Time. Time to reflect.

And in the middle of the darkest night, with only a light, cold breeze touching my face, it becomes clear that whatever I’ll be doing, whatever Pádraig will be doing, can never ever be a life with a focus on stability, security, predictability, one-step-at-a-time, let’s not risk what we’ve got.

In reality nothing is more damaging to the adventurous spirit within a man than a secure future. The very basic core of a man’s living spirit is his passion for adventure. The joy of life comes from our encounters with new experiences, and hence there is no greater joy than to have an endlessly changing horizon, for each day to have a new and different sun. If you want to get more out of life, you must lose your inclination for monotonous security and adopt a helter-skelter style of life that will at first appear to you to be crazy. But once you become accustomed to such a life you will see its full meaning and its incredible beauty. (Jon Krakauer, Into the Wild)

Life is too short and too precious and too exciting to spend it almost exclusively around therapies provided in your bedroom. I mean it, come on: what kind of existence is that? Dreamboaters are in search of the incredible beauty and the full meaning of life; in search of the great joy of life; in search of new experiences and changing horizons.

On top of a mountain, rolling along the asphalt for a thousand miles and more, on a trip across the dark blue sea, under a winter’s night sky.

Adventure of a lifetime.

Friday night is the night to relax after a busy week.

Albert Camus: Au milieu de l’hiver, j’ai découvert en moi un invincible été.

I’ll keep looking!

Before I’ll be going to bed tonight, I’m going to get some of this Himalayan incense one of Pádraig’s friends left here the other night. I’m going to get the thread he left, dip it into a bit of oil, fill the little stand with oil and light the home-made wick. I’m going to switch off the lights, sit down on the floor, make myself comfortable, breathe, and try to listen to my body. I’m going to think about nothing. I’m not going to remember how it was. I’m not going to imagine how it all could have been or will be. I’ll be sitting there for a few minutes and time will not matter. Nor will anything else going on in the world.

I found a quote by Nietzsche who said “Beware that, when fighting monsters, you yourself do not become a monster… for when you gaze long into the abyss, the abyss gazes also into you.” Meaning that it is easy to look at another person and think of their actions as immoral and it is easy to damn them, but how often do we damn ourselves for our immoral behavior? Its very easy to be a hypocrite but very hard to solve the hypocrisy within ourselves.

Translated to our situation this means: we better start changing things ourselves rather than just criticising others for not doing it.

Thursday is the day Pádraig’s friends come for a visit. They take turns. But some always show up. They’re not fighting monsters, they’re doing what needs to be done themselves. They’re not passing on responsibility for world peace to others. They know they are responsible for their life and that of their loved ones.