This morning, the HSE published their 2017 Service Plan. On page 32, it commits the HSE to:

…establish an innovative pilot day service aimed at supporting people with severe acquired brain injuries.

So tonight, we are celebrating that we have managed to change the hearts and minds of people who now realise that the most vulnerable amongst us have a right to live their life with dignity and respect.

Pádraig with his perseverance and determination, never taking a ‘no’ for an answer, has done what a year ago seemed to be the impossible.

Dreamboaters, ahoy! Change is coming!

Absolutely exhausted. Can’t believe what 45 minutes in a pool can take out of you! Pádraig is getting so much better, kicking his legs (well, moving them up and down), stretching his arms, keeping his head above the water line.

It was a day when Pádraig got use of the Wonder Drug – not by prescription but because of the help of his friends.

Through a symposium I attended today in the University of Limerick, I came across a number of initiatives at national and international level promoting what the Royal College of Physicians of Ireland, in their publication of October 2016, called a “Prescription for a Wonder Drug“. They were referring to nothing more and nothing less than regular physical activity – at a minimum 30 minutes a day.

They say that this “wonder drug” reduces the risk of diseases and even death by a huge percentage. For example, 30% all cause mortality risk reduction, lower risk of depression, dementia, and falls… and the list goes on… for the general population. There is a separate list showing the improvement in health with regular physical activity for those with chronic conditions such as heart disease, vascular disease, diabetes, and cancer.

Now, if physical exercise is so important, if it can be a life saver for those who are healthy, if it can dramatically improve chronic conditions – I, admittedly being a layman and all, I would say for someone who cannot or can only hardly move themselves, for someone who cannot stand unaided, it (physical activity) is an absolute must.

If you don’t move, you die. It’s just a matter of time – if you’re ‘lucky’ it’s a matter of a few years, it could be sooner. Not affording the opportunity of regular physical exercise through trained physios to severely injured, just because they are severely injured, while being fully aware of the dramatic consequences is… what?

About a year ago, when I asked the specialists in Ireland’s National Rehabilitation Hospital, the national experts, about their recommendation for Pádraig’s ongoing therapy requirements in the community they told me that they could not make those recommendations.

Repeat – they told me that they could not make such a recommendation.

Well – the Royal College of Physicians in Ireland has a 19-page “Prescription for a Wonder Drug”: Physical Activity.

A Wonder Drug denied to Pádraig and many, many others who suffered a severe brain injury, only and exclusively because of the severity of their injury.

Here am I, the innocent lay person, thinking: the more severe the injury, the more ‘severe’ the rehabilitation programme and help required – wondering what it is I am missing here? Because –

I want this Wonder Drug for Pádraig and the other survivors of severe acquired brain injuries. Not only is he as entitled to its prescription as is anybody else, he really deserves it because of his incredible motivation and self efficacy – both established, crucial factors leading to a positive outcome and, thus, to a “return of investment” (for the accountants amongst us).

(…) What we’ve seen is an underinvestment in education. And that means that people don’t know how to think, and that’s certainly not meant to be an insult to anyone: everybody  has to be taught how to think. It’s not natural to be able to weigh evidence and to be able to, crucially, realise that you might be wrong about something. (…) I think education is becoming a national security issue now.

Sometimes it is a good idea to read the paper, I would have missed this article about Brian Cox and his quote (see above), as I was catching up with last (!) weekend papers. We get the Irish Times delivered to our house every Saturday but at times it takes a while until I find the time to read it.

Since it wasn’t cold outside, not windy, and it didn’t rain (honestly – if this sounds to you like a mild Irish summer’s evening… this is exactly what it felt like), and Pádraig and I were on our own, we decided to go into town to see the lights and hear the buzz.

It was a great walk. Since we were there, we decided to go into the GPO and check out their new visitors’ centre telling the story of the historic role the Post Office played in the Rebellion (revolution?) in 1916. And what a visit that was! For the first time ever, we went out into the courtyard of this historic building where there is a very unusual monument to remember all the children caught in the crossfire of these historic days. There is also a wall with the names of all of those who were killed in 1916 fighting for Ireland to gain her freedom (compare that to the ‘wall’ in Glasnevin cemetery!).

Tonight, we’re both exhausted, but in a good way. Just thinking that we’ll have to do a bit of training before we’ll be able to do the Camino next year…

By the time we made it out to Bull Island it was getting dark. And a bit chilly. There were hardly any people left out there walking the 2k out to Realt la Mara (Mary, Queen of the Sea). To be honest, I had not planned to walk out the whole way with Pádraig, usually we drive almost all of it and then just walk the last 100 or 200 metres out to the statue. I have no idea what made me park the car on the coast road…

But what I first thought was a stupid error on my side turned out to be the beginning of a brilliant walk and a really nice evening.

The tide was in and the wind blew the salty smell of the sea right into our faces. It literally cleared my mind and made me think of all the wonderful things we are going to do together. What came to me first was that this was like a mini training session for our walk to Santiago – almost a quarter of what I’d think could be our daily average.

We arrived back just in time for mass celebrating the Third Sunday of Advent. Usually it’s Pat who goes to that mass with Pádraig; each time I go with him, I am taken aback by the number of people who come over to say ‘hello’ to him. He really is part of the community. And, (maybe not) surprisingly, more than he had ever been before.

They had a choir there tonight and as it happens, they sang “People get ready” – not quite like Al Green sings it (watch his absolutely beautiful and super-cool shoulder movements! And the immaculately white handkerchief!) – but they did a pretty good job too, AND they displayed the lyrics on a giant screen so that even I could follow.

Which is when I thoughT: this could really be our song.

People get ready
There’s a train a-coming
You don’t need no baggage
You just get on board
All you need is faith
To hear diesels humming
You don’t need no ticket
You just thank the Lord

And while Al doesn’t get to those lines, they did in mass:

Now there ain’t no room
For the hopeless sinner
Whom would hurt all mankind

So there’s no room for people who just hurt others. At the end I was singing in my head:

People get ready
There’s a dreamboat a-coming
…

Just changed ‘train’ to ‘dreamboat’ and the rest of the song was just fine.. I’m getting ready to get the diesel hummin’!!!

I’ll keep it short tonight, after a very busy day. All is good. Pádraig and I will be on our own tomorrow – time to take it easy. – Good night!

Today was one of our happiest day, especially for Pádraig’s sister, who, having successfully passed some of the most difficult exams I am aware of, was admitted to the Royal College of Physicians in Ireland. It was a brilliant achievement and a day we will remember for a long time. I am so proud of her.

Just back from the celebrations and a perfect dinner, one of those that only come along just once in a very blue moon…

Sometimes pictures don’t capture a thousand words. On this occasion, the pictures I took, in fact, did not capture very much of the absolutely incredible atmosphere at all of this evening of Carol Singing and Readings in the Chapel of St Patrick’s College just 15 minutes walk away from our house.

There were four choirs (I hope I didn’t miss any) filling the Chapel with the most beautiful and magic songs, one choir after the other, divided by readings about Christmas. I must say that I was in tears (Oh not again!, I hear you say), but not because I was sad or anything like it. I was in tears because I felt as if all those weights I’m carrying around with me had been lifted. I felt completely relaxed. Physically and mentally. You can’t use a ‘bleeper’ in a Church so I didn’t have a chance to ask Pádraig as it all happened, but I know that he was wide awake and moved and relaxed as I was. After the service, we joined the choirs in the staff room where we got home made biscuits and, of course, minced pies with cream, together with a nice hot cup of tea.

Now, the concert as well as the refreshments afterwards were completely free of charge, nobody was looking for money, not even a ‘voluntary’ donation. This was the essence of what used to be the Christmas spirit.

It was Pádraig’s first ‘late’ evening out and as we were walking back through the dark streets we all felt that we just had spent a night together we’ll remember for a long time to come.

(…)

The time out this evening was the best antidote to what had been an upsetting and not terribly helpful meeting earlier.

Just back from an An Saol Board meeting where we discussed our current work and looked forward to 2017. There is a clear need to “aufmischen”, re-arrange, what is going on in Ireland in relation to persons with severe acquired brain injury. The way they are being treated, the way their needs are being assessed, the way they are being supported, the way equipment is priced.

Maybe this is the next big scandal to come to the surface? Though it shouldn’t be about the scandal, it should all be about how to make things better.

So rather than bringing scandals to the surface, maybe we will be able to kick-start the €1.5m An Saol project, open a gym for disabled people (it’ll better have a pool:), and make equipment to people available under fair and ethical conditions.

One thing I heard about Fidel Castro is that he ordered that no square, no street should be named after him, no foundation or university, no statues or plaques. Fidel was a bit like Nikolaus only that his beard was dark, not white. Whatever you think about the two of them, they both had convictions and they acted according to their convictions.

Pádraig was swimming again today. He is getting so much better, so much more relaxed, it’s a pleasure to see him in the water. And I think he is enjoying it immensely to ‘loose’ his body weight for half an hour, to just float around in the warm water. Kicking his legs a bit, splashing with his hands, let the hair and the head hang down and get wet in the pool.

It’s one of the most exciting things Pádraig has been doing recently. He was able to do it because friends arranged it for him.

Not any of the State’s services. You wonder why not????

It’s good to have a sister who remembers. ‘Namenstag’, your Saint’s Day, is not a great deal in Ireland (neither are birthdays, as you know, once you pass your 21st:) so  I was happy to get that phone call from home with best wishes. In the past, mmhhh… the very distant past I must say, it was a brilliant day. As this is the day before St Nikolaus – he who fills your boots with sweets if you leave them outside your door on the night to the 6th – there were two consecutive days with loads of sweets and presents; those were the days when sweets were still special). And all just a few weeks before Christmas. It was always such a magic time.

There were concerts, Christmas biscuit baking, special masses with candles and Advent songs, it was cold, dark, and snowy outside and everybody slowed done from what, in hindsight, was a pretty ‘slow’ life anyways.

Advent is all about the ‘arrival’ (is that why they brought out the movie recently?), the arrival of the saviour, the arrival of the light that follows darkness, the arrival of a new beginning, of hope, of a new dawn. It’s about what keeps me going. The reason for never giving up. The time of the dreamboaters who know that anything is possible. The knowledge that once I get through difficult days, there’ll be another day offering me a new beginning. It’s a very ancient belief going back to pre-Christian times, a belief in the ups and downs, a belief that things don’t end but always emerge on the other side again, renewed.

Got a note today that two pieces of equipment we ordered for Pádraig are on their way – both will make a big difference for his upper body and general cardiovascular system, in addition to everything else from his lungs to his heart and inner organs. No idea where all of this is going to go but it’s almost time for another extension… 🙂

Pádraig had a busy day today with two therapists helping him with his communications and physical fitness and control.

No word from the Department of Health or the HSE yet – but it shouldn’t take much longer until the Minister of Health will sign off the HSE’s service plan for the next year which is when we will find out what happened to our An Saol Project proposal!