Lotus

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.)

CHY21684

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.

Pinch

“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.

Adventure

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.

 

Hypocrisy

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.

Living

“Life is like riding a bicycle. To keep your balance you must keep moving.” He wasn’t a super-cyclist and he certainly wasn’t a therapist. But he was Einstein.

Wednesday is Pádraig’s massage-day. Soothing music and a relaxing massage. What a start to the day! Later on, in the early evening, Pádraig went to what must have been one of the best choir-led carol service, or Christmas concerts, ever. St Patrick’s College in Drumcondra was the host making it obvious why their music programmes are so well-known and well-respected. Pádraig hugely enjoyed the evening, the music and the first minced pies of the season.

By contrast, I spent the evening attending a course in governance for charities, together with some distinguished board members of the An Saol Foundation. I won’t bore you with the details.

Earlier in the day, however, I got a sneak preview of what our architects have been planning for the FABrík, the living lab and day centre we’ll be opening next year. They will present their ideas to the An Saol Foundation Board next week. What they are proposing is mind-blowing. It really captures the Dreamboaters’ spirit realising the most exciting, brightest, and energising space for life and living, for holistic neurological rehabilitation. It’ll change the lives of those being, living and working there.

With all it’s highlights and lowlights, today was about living. About feeling, hearing, touching, smelling, tasting. About living and being alive. Keep moving, keep living.

WalkingOnWater

Pádraig put one foot in front of the other, straightened his leg, stood up, moved forward and did the same with his other leg. Slowly but surely he moved himself, he walked from one side of the pool to the other. I was supporting his back and was holding his head and could not see what was going on. But I was feeling it and obviously noticed how Pádraig was moving forward, lifting himself out of the water. But the carer who accompanies us saw it all happening. None of us could believe it. It was truly extraordinary. “Christmas has come early, eh?” said the pool manager who had been watching Pádraig, when we were getting out of the water.

I struggle with the concept of ‘miracles’. But today, in my mind, Pádraig could have walked on water. It was that good.

Spectre

Here is something you can do if you live in Ireland. Check out the website of the Neurological Alliance of Ireland and send a message to your TD to support a private members’ motion.

The Neurological Alliance of Ireland (NAI) today published details of a Private Members’ Motion to be raised in the Irish Parliament, the Dail, this coming Wednesday. They are asking people living in Ireland to contact their TDs, their members of parliament, to support this motion.

You can find the text of the motion here and you can send an automated message to your TD from here.

The motion addresses the incredible state of the services, or rather: the lack thereof, in neurological rehabilitation. Just some points:

— the National Policy and Strategy for Neurorehabilitation Services (neurorehabilitation strategy) was published by the Department of Health and the Health Service Executive (HSE) in 2011, with an implementation plan promised within six months but still unpublished six years later;

— the Minister for Health in February 2017, requested an implementation plan to be published by the end of June 2017, but a working group to develop the plan has not yet been put together and this is the second deadline announced and missed in 2017 as the HSE will not deliver the plan by December 2017;

— it is estimated that only one in six people who need specialist rehabilitation services in Ireland can access them;

— Ireland has less than half the number of specialist rehabilitation beds recommended for its population;

— Ireland has the lowest number of consultants in rehabilitation medicine in Europe;

… and they are not mentioning:

  • the lack of social rehabilitation. The my mother in-law was in her late eighties, the was collected from her home to play Bingo twice a week, despite here repeated protests (“I haven’t played bingo in my life and I will not start playing it now”) because people need social interaction. – But guys in their 20s with an acquired brain injury don’t seem to have the same needs …?
  • rehabilitation services are available in places like the Central Remedial Clinic (CRC), just a few kilometres away from where we live. But – our request to offer these services to our son was rejected because he was not born with a disability!?
  • home care services, although sanctioned and budgeted for, are not delivered, two thirds of our son’s carers are allowed to take leave simultaneously, carers ring in sick – but there is no cover provided; all that when I am looking not just after Pádraig but after someone else in the house too!?
  • the list goes on and on and on…

What is going to change? When is it going to change?

The answer is easy: when WE WILL MAKE THAT CHANGE. Nobody else will do it for us.

50 years after a famous book was published by (another:) famous German, here is a slightly modified quote: A spectre is haunting Ireland – the spectre of decency. Dreamboaters of Ireland. Unite!

Security

The Adventsplätzchen I made yesterday are still around, we didn’t manage to eat them all. With them there is the smell and the taste from times past when things were easy. When nothing went wrong. When troubles were: not being able to watch “Flipper” on a Sunday afternoon and having instead having to go on this Sunday afternoon “Spaziergang” in a nearby park. When the highlight of the month was: being allowed to go to the special Sunday afternoon kids cinema show offering of Karl May’s Winnetou 1 (and the follow-ups). When adventures happened in my mind, when I was, under the table, covered by a long blanket and using a flashlight, reading about life on horse back, blood brothers, and men who kept their word.

Since then, and especially more recently, the sense of security has gone. Replaced by fear.

But tonight, and following a visit by one of Pádraig’s friends, things have changed a little. Just for tonight. For the time being. Calm is the dominating feeling. Don’t expect anything. Accept what is there.

Pádraig went to visit his grandaunt this afternoon. He had an easy day.