A Sunday afternoon by the fire catching up on the news of the week with Pádraig. Re-playing some of the week’s interviews on the telly, like that with Irishman Ibrahim on last Friday’s the Late Late Show, reading the tweets about it in parallel. And watching an episode of RTÉ’s new Salon Confidential, according to The Irish Times the station’s attempt to increase its under 35 audience. I can tell you: it’s worth watching even if you’re over 35 and want to find out what those young people are up to these days. And then contrast this with the emerging scandal of (over 35) Michael Colgan’s alleged remark to one of his employees as reported on tonight’s news.Earlier in the day, Pádraig and I had listened to German Radio Station Deutsche Welle with a report on eco-holidays on what was presented as one of the world’s most beautiful island. We checked out what they were talking about on YouTube and that island in the Philippines called Palawan. Never heard of it. But it does look incredible.

There are tons of things we’ve never heard of. Things that are part of other people’s daily routine and life. So lets keep exploring!

Someone told me, I tried to find it, and am still looking: apparently, Ireland is going to be one of the coldest countries in Europe tonight and tomorrow.

To be honest: I’d find that hard to believe. Dublin colder than Warsaw? – Though these days, anything is possible.

So just in case snow will close down the country tomorrow, we went out for a walk today, down Dorset Street, passing by Parnell Square and the Municipal Gallery, crossing through the Ilac Centre, into O’Connell Street, quick look into one of the last Guiney’s shops on Talbot Street, squeezing in between the Pro-Cathedral and the Department of Education towards home. – I know, a long list of streets and places, and yes, when we came back the first thing we did was warming up again. I was a really good, long walk and I know that Pádraig enjoyed the buzz on the streets.

Weather permitting, that’s what we’ll do every Saturday afternoon: going into town, going into museums, going up the mountain, going down by the sea – whatever it’ll be: it’ll be going somewhere. We’ll keep going. No matter what!

There are times, when what the news, the entertainment, the radio talk, the talk shows on TV all seem so ridiculously redundant, worse: they sound like manipulating propaganda with little or no relationship to what is really going on.

Ireland seems to be out of control, meaning: the health system, the police, housing, banking, building, the church… you name it, they all seem to be rotten to the ground.

Whether this is so or not, who knows. But this is what the media make us believe. And there is no visible change for the better. Another 400,000 false breath tests were ‘discovered’, the health system will be more challenged than ever before this winter, the banks apparently haven’t done anything wrong, and housing problems are getting worse by the day.

There are no absolute ever-lasting ethics. Yet, we need to know what is right and what is wrong and we need societal consensus about it. And then we need to deal with those who break that consensus.

By contrast, today we had such a good day that I felt, for the first time in a while, that we are getting somewhere good. Pádraig had fun, really collaborated and got better during his physio, we went out for walks, had good food and a glass of wine. We were still talking about the regular Thursday visit by his friend who yesterday had brought not just biscuits (and flowers for Pat:) but also homemade pumpkin soup and loads and loads of good humour and laughter.

Always look at the bright side of life.

I remember those days when I was reading a book and bit by bit, a whole new world opened up in my mind. When, in my imagination, I entered into a different reality. One that someone described but one I created in my mind. People living in a different reality today, live in Facebook-land or Instagram-land. They walk the streets likes zombies, locked in their own world, head down, eyes firmly fixated on a small screen. Germans (ah, Germans!) and Dutch (mmhhh…?) are so concerned about their fellow countrymen turned zombies that they have installed traffic lights on the ground so they couldn’t be missed – even if you’d never look up.

The lesson?

If you don’t get the attention of those to whom you want to signal some important messages because they just choose to look the other way, you change tactics.

You put that message right in their way where they can’t miss it, where they quite literally stumble over it.

Pádraig keeps doing well, his head control is getting noticeably better and his reaction times too. It will take some time, but one day he will not just be able to sit in a chair all by himself, he will also be able to walk, even if that will require some level of support.

Talking about support. When I talked to a rehab consultant today, I nearly cried, realising the many opportunities we missed, realising that we have spent so much energy and effort and time trying to convince the ‘professionals’ that Pádraig requires ongoing rehabilitation.

The world’s longest running conference on Virtual Reality, VSMM, today welcomed Pádraig and myself to give a talk, together with Prof Lizbeth Goodman of UCD’s SmartLab, at their 26th annual conference taking place this week in Kerry, Dublin and Belfast. We highlighted our collaboration and plans to use virtual reality for survivors of severe acquired brain injury and the people supporting them. Pádraig gave his first international conference speech using the Tobii Dynavox.

Talking about our collaboration with Prof Goodman… RTÉ will start broadcasting a new series on Mondays, starting on 13 November at 20.30, called “Ten things to know…”. It will feature Prof Goodman and Pádraig flying a drone (!) on 20 November.

Exciting times and a testimony to what can be achieved if we work together starting to make the impossible possible.

Mark Pollock said at today’s event that sometimes we choose challenges, sometimes the challenge chooses us. It’s what you do about it that counts. History is full of accounts of making the impossible possible. Check these and other examples out here:

• 1876: “The Americans have need of the telephone, but we do not. We have plenty of messenger boys.” — William Preece, British Post Office.
• 1889: “Fooling around with alternating current (AC) is just a waste of time. Nobody will use it, ever.” — Thomas Edison
• 1959: “Before man reaches the moon, your mail will be delivered within hours from New York to Australia by guided missiles. We stand on the threshold of rocket mail.” — Arthur Summerfield, U.S. Postmaster General.
• 2007: “There’s no chance that the iPhone is going to get any significant market share.” — Steve Ballmer, Microsoft CEO.

One day soon, we will wonder how anybody could ever have thought, never mind said, that persons with severe acquired brain injury couldn’t and shouldn’t be supported with dedicated rehab programmes for the rest of their lives.

The blood transfusion bags had disappeared. The moment we needed them most, someone had taken them away. To who knows where. Those bags were impossible to get. Sweet, heavy blood. No wonder they had sold out in Lidl the moment they arrived. There’s no doubt in my mind that we would have won the best costume competition at this evening’s Bram Stoker lecture in Trinity College – especially given the competition on the night – had we turned up covered in blood and sucking more supply of the sweet red stuff from Lidl’s specially prepared transfusion bags. Sadly, some young one with a face painted white and another one with a ‘funny’ dog hat got copies of David J. Skal’s, tonight’s guest lecturer, new book Something in the blood – the untold story of Bram Stoker: the man who wrote Dracula – a rather long title, making really sure to be sure that even the biggest ignoramus gets the point of the book:)

But – we had a blast anyways. The organiser of the lecture came over to welcome Pádraig back to TCD. He told me that he had been in this theatre for his history lectures and that he had really learned a lot here (not sure whether I believed the whole story, to be honest). Be that as it may – we decided that we’ll be back here soon. Going out in the evening, smelling the petrol in the streets, listening to interesting talks, seeing cool people, being scared by witches, pirates, and vampires – isn’t that what life is all about?

How would you write about the experience of a brain injury? And why would you do it?

I would do it to help myself and hopefully others to reflect and maybe to answer some important questions which any of us could face at any time:

1. Can an ‘intolerable life’ justify the withdrawal or the denial of life-saving and life-preserving treatment?
2. What is an ‘intolerable life’ anyways?
3. If no-one can predict the outcome for someone in a minimally conscience state, how can a reduction of treatment be justified by the prognosis that no further recovery can be expected?
4. Can treatment be denied based on the prognosis that it would not bring any significant benefit? Are there different answers to this question depending on whether we are talking about terminally ill cancer patients (who will most likely die within a short period of time) and survivors of severe acquire brain injury, sABI, (who have most of their life ahead of them)?
5. Why is it almost never a problem to get access to expensive drugs but almost always a problem to get access to much much cheaper therapy?
6. Why is it acceptable to abandon survivors of sABI and their families?
7. What is the impact of an sABI, not only on the survivor, but on their family and friends?
8. Is the question: “Would it have been better had he died” legitimate, ethically correct?
9. How do the two rights, the right to die and the right to live, relate to each other?
10. Is proper, full rehabilitative treatment a basic and fundamental human right – and can the denial be compared to torture?

As today was a bank holiday, we took it easy, had a lie in, did some basic exercises and went for walks. I went for a run and, miraculously, the back pain that had started to bother me disappeared. And for a moment I had thought I’d better rest instead of going for a run, because of my back.

Meaning: sometimes you have to do the opposite of what you might think you should be doing in order to get the results you’re looking for.

Someone I don’t think I’ve ever met ran the Dublin Marathon today and fundraised to support Pádraig’s rehabilitation. Following two years of trying to keep my job going. Following another two years of carer’s leave (at a social welfare rate). Following consideration of going back to a job that was not really there for me any longer. At a time when not even the care for Pádraig was working. I am now on a career break with no salary. And there is young person. Running a marathon. To fundraise for Pádraig.

It’s a world of two extremes. Both, in their own way, incredibly amazing.

I think about life and death. I think I was born, I am living, eventually I’ll die. After many years of living, listening and reading, for the first time, today, I realised that there is another perspective. With a focus an initial focus on death, almost starting with death, and then moving on to life, eternal life.

I became aware of the perspective tonight when Pádraig and I were at mass. I don’t think there was any mention of life. Not much about living. But a lot about about death, dying and life after death. Almost as if you had to die before you could live. It’s like upside down. Starting at the wrong end.

What does that mean? Why is that so?

What the world needs now.

I heard it on the radio this morning and listened to it again this evening. There is hope, and not only hope, but conviction that the world can change and that if we put our minds to it, we can make it happen.

I know. It sounds corny. Like world peace.

But contrast this with what passes as reality, the reality presented to us on the news.

There will always be people who will rob, steal, cheat, take advantage of others, live the good life at our expense. There will always be people who believe that the status quo is ok, even it that means loads of homeless, sick and lonely people (where do they all come from?) being ignored and left at their own devices. It is up to us to make sure that our representatives don’t just make statements but lay down the rules and making sure their are observed.

How can it be right that a man who sexually assaulted residents in a nursing home and uploaded footage of these assaults to Facebook got a suspended sentence? Imagine if someone had uploaded footage of sexually assaulting the son or daughter of one of our politicians.

Pádraig is really enjoying the good weather these days, going out for walks, getting loads of fresh air. Pat as well went out for her first, short walk today. Really, really good and encouraging.

Also encouraging: we’re getting closer to making the An Saol Project a reality. We have costings for the refurbishment of the premises we have been looking at for the past weeks and a specialised company will start working on fire certification and planning permissions.

What the world, my world, needs now.