I’d be safe and warm if I was in LA… Keep on California Dreaming’. If you’re goin’ to San Francisco…

This was Flower Power time. The dudes were cool, groovy, outa sight boss, with plenty of MJ and brew, dig it?

So here is one of these combos who wrote a few anthems of this time: The Mamas and the Papas in sunny California.

I looked them up on youtube and, guess what? They look like the most un-coolestest gang ever. Check this out! Who made that hat? Who cut the other guys hair??!

Wow! Is this music?

Pádraig is listening again to his CD’s, CD’s friends brought in when they visited. It’s such a brilliant way to dream, close your eyes, and travel to wherever you would like to. From the #GreatAmericanCycle we will need to post short videos, pictures, music all the time to include Pádraig as much a possible. Dreamboaters on Tour! Can you dig that?!

 

Our team in America is getting ready for the Great American Cycle #2. The route is set, the posters and brochures are ready to be downloaded and distributed by anyone who wants to help from the events site on http://www.ansaol.ie. Meetings are being arranged, cycling clubs are getting ready to join us, and today, our promoter in Hollywood contacted one of the local bands playing in the desert (see last Thursday’s posting) whether they would support us.

With a bit of luck we could be sent off from the desert, right beside the Joshua Tree National Park, onto our €1.5m fundraising trip. Would a feeling that would be like!

There are two ways for Pádraig to transfer from his chair into bed, manual or using the hoist. For the first time, today he said he preferred the manual transfer. It’s significant because the manual transfer involves an effort and some level of control on his part, while the transfer using the hoist is almost complete passive. Pádraig had an option and he took a decision.

Last day in boot camp, reaching for the sky. We had planned this for week: leaving Pádraig’s fingerprints on the ceiling. Note: he is standing on his feet, the therapists beside him are standing on chairs – and still can’t reach the ceiling:)

But the really amazing thing is not that Pádraig can reach for the sky (we’d had known that for a long time:), what is really stunning is that he can almost stand by himself. He is getting some support, but very little. He can’t really hold his head up straight nor his upper body all by himself when he is standing, but he is getting there. He is holding on to the specially adapted ladder in front of him, a therapist sitting beside him on a chair secures his legs, I am supporting his back and head a little, while the third helper his helping Pádraig to leave his fingerprints on the ceiling!

TheJournal had an article about our meeting with Simon Harris and his officials recently which is absolutely great. Almost 10,000 people checked it out over the past few days.

Finally, one of the really cool therapists is booking his holidays for next year – including a few days around the first week in August – because himself, Pádraig and I are planning to go to Wacken next year! Waaaaaaaacken!!! So in the spirit of Heavy Metal, I checked out some Bon Jovi songs to get into the swing of it. And the songs are just brilliant. Pure Dreamboater stuff! “It’s my live” and “Living on a prayer”

Turn up the volume to max!

 

After five hours of travel (!) we’re now at the gate of Aer Lingus’s flight back to Dublin. It’s half an hour late (for now) and we’re getting more tired as time passes. I’d say we’ll be collapsing into our beds when we’ll get home tonight. Pádraig told us today that he loved boot camp in Pforzheim, the positivity, the drive, the celebrations of each and every little and big step forward! But he was also looking forward to getting home. Looks like we’ll have to combine both: home and intensive therapy. Leaving our fingerprints along the way.

 

 

And if my thought-dreams could be seen, they’d probably put my head in a guillotine. But it’s alright, Ma, it’s life, and life only. – The last few lines of Dylan’s song “It’s alright Ma (I’m only bleeding)“. The “Easy Rider” version of the song by Roger McGuinn is probably better known than Dylan’s own. It’s one of the most amazing songs ever. How did he came up with the lyrics? How did he manage to remember them? They go on and on and on in a stream-of-conscience-like rap rhythm. Listen to it (the lyrics are on youtube below the song:)!

Music is like smells – it works like a time machine, it instantaneously transports me into another world.

Just heard about this amazing concert taking place in the Californian Desert during our #GreatAmericanCycle.

Unfortunately, we won’t be able to go there, but the music of all these great musicians will be in our ears and in our minds when we’ll cycle up one of the most iconic routes in the world to raise visibility and funding for An Saol.

We asked Pádraig and he’s sad that the time here is over – but, at the same time, he’s looking forward to being back at home! We told him that we’ll back here soon, that he’ll continue to get better, that we would continue to travel, listen to music, weird and wonderful, chilled out, out of this world, never the same, never standing still. Dreamboaters.

Finally, here is another one: White Room, with the best way-wah guitar solos ever…

In the white room with black curtains near the station.
Black-roof country, no gold pavements, tired starlings.
Silver horses run down moonbeams in your dark eyes.
Dawn-light smiles on you leaving, my contentment.

How did they come up with this stuff??

The little know-all innocently looking girl knows it, and the smart guy from AT&T knows it too: More is Better. We want more!

Today we got more. Both, from Pádraig and for Pádraig. Have a look! Check out, how he stood, with almost not support! He walked in two different walking machines/mechanism (one was the famous and shockingly expensive ‘Vector’) suspended from the ceiling in a ‘jump suit’ – and we learned why it might be better (at least at them moment) if he continued his attempts to walk with people (rather than machine) support.

Our last day here in Pforzheim for this session of intensive neuro rehab is fast approaching. Each day here it became more apparent why we need more, and why we need more in Ireland – what is the point in trying so hard here and not continuing the effort with the right equipment and the right staff back home?

More!

Here is one answer to the question “what has changed?” – Pádraig was sitting in his wheelchair and held his head for at least three minutes, all by himself. A personal best (PB) after extremely hard training sessions!

This is stuff dreams are made of. Today, we were dreaming about how he’ll be next year. Standing by himself? Walking with support under his arms? Being able to use his voice not just more purposefully but also more articulately? Being able to control his environment? Being able to communicate what he wants to do, to wear, to eat, to drink, to read, to…?

Will you help us to get him there?

Time to say ‘thank you’. Because today’s meeting with the Minister of Health, Simon Harris, T.D., was the result of the hard work and dedication of hundreds of people who, in their own way, have contributed to making the hidden crisis of the abandonment of sABI survivors public. And by making it public, they have contributed to getting the attention of those who are in a position to help us to bring change. The people who have been supporting the idea of An Saol from the very beginning with their very generous donations, their time and their expertise, fabulous beautiful crazy fundraising ideas, their efforts to spread the word amongst their families and friends, to people with ideas and influence. People who are directly affected by sABI, some of whom very sadly lost their loved one and of whom we think tonight especially. Admirably, however, also people who feel so deeply, so strongly, with so much empathy, about the abandonment of the survivors that they make it their ‘case’ to bring about change – even though they are not directly affected. Thank you to all of you, Dreamboaters!

Simon Harris, today, pledged his support to the An Saol Project and to our efforts to advance it. He said that he felt very strongly about it. He commended An Saol for its solid and thorough work in the preparation of the proposal. He and his officials listened to the stories of four families, provided first hand by Catherine, Joe, Terence and myself. There was an immediate agreement that what is happening cannot be allowed to continue.

What will need to be addressed in relation to the An Saol proposal are operational issues which we will start working on, together with the HSE, next week. There will be another meeting with Minister Harris when he will be joined, hopefully, by Junior Minister McGrath in a few weeks time.

I’m back from Dublin, sitting on the train from Frankfurt to Pforzheim with an ETA of midnight. So relieved. Because I nearly missed the flight, then the train, and several connections. It all feels a bit like the Midnight Special.

There are millions of different versions of this song, and even the lyrics vary – with one of the very early versions going like this:

Get up in the mornin’ when ding dong rings,
Look at table — see the same damn thing

…very similar to the Luke Kelly’s ‘auld triangle‘ and the ‘hungry feelin’ (but missing the verse about the female prison:).

When we’ll wake up tomorrow morning, we won’t be seeing the ‘same damn thing’. We’ll be looking at the beginning of a new era, a new life for sABI survivors and their families, of the beginning of a process that will change the hearts and minds of people, including professionals, about sABI.

What we have been told about our loved ones by professionals, how our loved ones and we have been treated at times, seen as wasters of precious and scarce resources in the health sector (because there was no ‘return on investment’), the ‘feed, medicate, hydrate’ maintenance approach – all that will one day soon be a thing of the past.

On that day, we will look back and wonder how on earth the inhumane and degrading treatment of people with sABI and their families was allowed to continue for so long. Why didn’t we shout ‘STOP’ earlier? That day, we will remember today’s meeting, when the Minister of Health heard the story of a 30 year young man ending up in a nursing home. And when he said, softly, ‘he’s my age’.

We’re not there yet, but we can certainly see the sun raising beyond the horizon, at the end of the line for the Midnight Special. We’ll get out of the darkness. Soon. And I’ll be in Pforzheim by midnight:) Hopefully.

 

Some of you, especially the Irish, probably spent this afternoon getting ready for the big match in Croke Park today, the All Ireland Football Final between Dublin and Mayo. If you were in Paris, chances are that you had a brilliant time at the most amazing Kaffeetrinken with the most amazing cakes ahead of that big match.

A really good friend of Pádraig’s organised the first international home-based fundraiser for An Saol in the world’s most romantic city. Look at this – isn’t it absolutely amazing?

To remind us who their fundraising efforts will support, here are a few (‘sample’) stories about people with sABI who contacted me over the past couple of weeks. – If you ever were in any doubt that things have to change….

A young man in his teens with a severe Acquired Brain Injury is about to be sent from an acute hospital to a nursing home – when the family doesn’t want this to happen. Another young man with a brain injury is being looked after by his (single) mother at home – she is getting no help whatsoever. The care and medical decisions of a third young man with a severe acquired brain injury in a nursing home are being made by a doctor who does not share the medical information with the family.

I’ll be meeting the Irish Minister of Health, Simon Harris T.D., tomorrow afternoon with some other family representatives to ask him for his support for An Saol.

What he will decide tomorrow will say a lot about our government and our society.

We know that we’ll always have Paris, though!

Spent a bit of time today talking to our friend in Napa who is organising the welcome party for us at the end of the #GreatAmericanCycle. Looks like we’ll be meeting a group of professional American cyclists in Novato at the Marin Cycle HQ at 12:30 on Saturday, 15 October 2016, to cycle that last 3:30 hours with us to Napa. Could it be any more concrete?

To be honest, it’s so concrete it really scares me.

Now we just need to organise something like that for the start in Hollywood and the bit in the middle will sort itself out.

It’s a bit worrying that we seem to do everything the other way (note I didn’t say the ‘wrong way’) round. But, hey! This was never going to be an ordinary cycle!

If we cycle from Finish to Start, i.e. from South to North (instead from North to South like almost everybody else) – there’s no harm to organise the last leg long before we deal with the first one. Right?

Pádraig had a slow, quiet day today. A lazy morning with a late breakfast. Easy-going lunch. A walk into town. A bit of shopping in C&A (he picked a great looking jumper for himself). It’s the last weekend in Pforzheim. It’s just two weeks ’til I’ll be packing the bags for the #GreatAmericanCycle.

T. S. Eliot once said that “What we call the beginning is often the end. And to make an end is to make a beginning. The end is where we start from.

Time flies, though. Even if, at times, we start things from the end and work our way up to the start. Time just disappears into nothing and is lost forever.

Some afternoons we walk up with Pádraig to this park. When our German friends talk about walks in the afternoon, they say to stay clear of these parks. Not only because they are not well maintained, but because of the people frequenting them. Yet, this is where Pádraig has made friends. The kids from the Middle East who asked him had he died and arisen (nothing unusual in their mind) – causing a huge smile on Pádraig’s face. The woman from around the corner living with her daughter of €40 social welfare a week and €30 worth of plastic bottles she collects (and people leave for her in the park). Getting out of the park on the other side is a bit tricky as there are bars supposed to make it difficult for motorbikes, for example, to get through. Never was there no help offered to navigate Pádraig’s wheelchair around the barriers.

Today we saw where they are living: just beside the park in what planners in Ireland had called ‘modular’ living spaces. Containers stacked upon each other and bolted together.

Pforzheim has taken in more refugees than the whole of Ireland.

Today, as most days, Pat and I practised to ‘walk’ Pádraig across the room. Today was the first day, however, that we managed to do (a bit of) it without direct help by the therapists:)