For some reason, I’ve been feeling edgy for the last few days. I have this list of stuff to do. A list I put together last week. The list is a long as my arm. All important things. All need to be done. Not tomorrow, not next week or next year, but now. Urgently.

The problem is: no-one, not the best organised or capable person in the world could possibly do all those important and urgent things on that list. It’s impossible. Yet, I keep working on it. Trying not to become overwhelmed. And keep going

Pádraig went back to the CRC today to get a new table with an integrated switch. If it works as planned, it’ll be fantastic.

It became so clear today that what stands in Pádraig’s way, what makes it so difficult for him to communicate, is not a lack of ability. The barrier is access to services that would assist him to overcome whatever restrictions there are.

It’s as simple as that.

Knowing this and not providing him with this access is against any common sense. In fact, I would say it’s denying him his basic human right.

If you ever tried running, you probably have experienced that feeling when this person comes up from behind, passes you out, and you wonder how they do it. It looks as if they were not touching the ground at all. They seem to float by, defying gravity – while you are struggling to put one foot in front of another.

Ok. Maybe it’s an age thing. At least in my case. Comparing my fitness level with that of a 20 or 30 something year old just doesn’t make sense. At least that’s what I’m telling myself when it happens. Even if that person passing me out is pushing a buggy.

But today, I experienced the ultimate insult. Two fully dressed lads just flashed by. I could hardly see them, they were that fast! And, as it turned out, they were not even ‘running’ – they were just trying to catch a bus!

I’m not giving up. I’ve set my eye on the Hamburg and Dublin marathons next year and will just keep trying. I won’t win them, but arriving in one piece would be nice.

I’m doing it because I want to show Pádraig that he is not the only one who is trying really hard on that long, long road to recovery. Today, he had a brilliant session in the standing frame when he held, for the first time, his head and upper body straight with just some back support. This afternoon, in the pool, he did brilliant leg work both on his back and when walking across the pool, in addition to showing really good hand and arm control when pulling and pushing himself towards and away from the side of the pool while holding on to the side rail.

There is no doubt in my mind that Pádraig will be walking one day, maybe in 2018. Because he just won’t take no for answer and the very concept of something not being possible has never entered his mind. What an example to follow.

One night last week when one song brought on another, I kept a couple that I wanted to share. So here are the fabulous Moody Blues with The Story in your Eyes and Dutch band “Focus” with the truly (literally) incredible Hocus Pocus.

I can make some sense out of The Story in your Eyes and can really relate to  the lyrics:

Listen to the tide slowly turning
Wash all our heartaches away
We are part of the fire that is burning
And from the ashes we can build another day

But – what do you make out of this:

I mean – “Full lyrics on Google Play Music”??? I’d love to see the rest of these ‘lyrics’!!?? The thing is: no member of the Moody Blues would ever have managed to roll his eyes like Thijs van Leer on ‘vox’, flute and organ did, when he psyched himself up during this breathtaking live performance.

Around Pádraig it feels like everybody is packing up their bags. There is an exodus of therapists and carers out of Ireland that is unreal. It’ll be interesting to see how he and us are going to cope. A surprise is unlikely, but might not be completely out of the question: maybe, just maybe, we’ll have a brilliant, very normal, time. In good company, with late lie-ins, nice walks along the sea or in the mountains (well, what passes as ‘mountains’ here). On the other hand, it could mean complete melt down and final burn out. “Wir lassen uns überraschen”, we’re looking forward to be surprised, as the old German saying goes. (Not that Germans really like surprises.)

Finally, a journalist published a piece in  The Irish Daily Star on 20 November, the day Pádraig became famous on RTÉ One during Science Week. She was so kind to send it on.

Pádraig had a full house last night. Dozens of friends joined to celebrate Christmas with him. They brought food and drink. Some brought their instruments. Some staid for just a short time. Some left later, after the best seisiún ever.  There were many highlights. The incredible (Jamie Oliver-inspired) mulled wine, with many secret ingredients and a “drop” of poitín, apparently sourced from a teacher (!) from Connemara (you know who you are:). The fantastic food. The brilliant music. Above all, so so many friends, some of them hadn’t seen each other for months, some of them had just arrived from England and the US. – If you wondered about the Christmas spirit, if you wondered what Christmas was all about, it was all there last night.

It always seems to take a little while. And so it did last night. But eventually, the instruments were taken out and after some phenomenal traditional music, and a bit of a warm up, we were treated to some individual master pieces. Towards the end, the original Dreamboater Cast presented, or rather: joined in to the title track of that album they had put together after Pádraig’s accident to raise funding for his treatments – for me, it was the first time I heard that song live and I couldn’t but cry and, at the same time, be filled with energy and determination. The night finished with that famous song by Shane McGowan.

Got on a lucky one, came in eighteen to one. I’ve got a feeling this year’s for me and you. So happy Christmas. I love you baby. I can see a better time when all our dreams come true.

Dreamboaters ahoy!

Pádraig really had an incredible night with his friends. Who would have thought any of this would ever be possible again, when he was struggling for his life just a few years ago? Who would have thought we’d ever feel like celebrating Christmas again? To be happy and to share our happiness with each other over the Christmas days? It felt like a miracle, made possible by the friendship shared by Pádraig and his friends. Dreamboaters who will always do what is right and who won’t ever believe if someone tells them “this is impossible”. They are living proof that whatever you want to do, whether it is swimming around Ireland, making mulled wine with Connemara poitín, or recovering from the most life-changing injuries – is possible as long as you stick together and are there for your friends.

What a night! In 30 years time, I think many of Pádraig’s friends will remember this night: how beautiful and young everybody was, and how happy.

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.