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.

Pádraig and I are invited speakers at the 2017 Conference of the International Society on Virtual Systems and Multimedia taking place next week in UCD. We are in illustrious company and it is a huge honour for us. Our contribution will be delivered by Prof Lizbeth Goodman. Very unfortunately, given our current circumstances with another ‘patient’ in the house, we will not be able to take up this very kind invitation in person this time, but we will be there in spirit!

We had another visit in the CRC and met with some therapists there who are going to do a few things for Pádraig: they will prepare a better table for his wheelchair with a fix and a ‘sunk’ access point for his switches; they will build a new switch replacing the ‘yellow’ yes/no switch that got lost during our last visit in Beaumont Hospital; and they will help us to develop a ‘low-tech’ communication system for Pádraig that we will then, in a separate step, transfer to his Tobii computer. Altogether quite amazing news!

His physio sessions amaze each time as Pádraig is showing strength and determination that almost spectacular in the context.

I’ll be going to sleep tonight knowing that things could be so much better, but feeling that things could also be so much worse. They always can.

We’re getting somewhere. Got a bit of a handle on costing. Talked to fire consultants. Almost have enough information to take a decision. Can I see the day that we open An Saol in this building? – Of course. Can’t wait for it!

Dolly (the dog that moonlights as therapy dog at times) dropped in this afternoon to visit Pádraig and to attend his music therapy. Earlier in the day, he used his fingers to select options on a touch screen computer (helped by his new carer). He had a lot of fun during that session with his SLT, taking them on when they asked him stupid questions like: “Are you a good swimmer?” – I had to think of that lady in the supermarket who told Pat she had a great helper with her looking a Pádraig. And Pat saying that he was not much of a help – provoking a huge smile on Pádraig’s face. – Of course, he is not a good swimmer at the moment. How could he be? But he is getting better! So is Pat. There are moments when I can see us living in peace together, happy.

Something’s got it. Some things haven’t. You can loose it. And as I found out today, you can get it back if you try! The spark. The Momentum.I almost lost it, the momentum, got frustrated because of a lack of progress, But now, I’ve got drawings (supplied by a good friend), we have an architect (another friend put me in touch with), fire consultants (I found on the web;) looking at them, and quantity surveyors costing the refurbishment. We are about to nail this down and make it happen. All we need is all these people, from the owner to the engineers and architect, to believe that we can make the impossible happen.

Maintaining the momentum.

To be honest, these last few weeks have been so difficult. Never mind any ‘momentum’, it was like ‘just let me get through this intact’. It was all about the meaning, the absurdity and the hurt life has in store, all bundled up and delivered in its most distilled form, hard to swallow.

Pádraig’s new carer has discovered that if she gives him the time, Pádraig is well able to help by lifting his legs, arms and his head. All of a sudden, what was a one way ‘duty’ has become an interaction where he starts doing stuff, like getting dressed, not quite by himself, but he is showing that he is not just clearly conscious of what is happening, he has started, in a small but in his own determined way, to do it himself.

He misses Pat who now spends some time with him every day, but is still on her own path of recovery. It’s all getting better. And there clearly is momentum:)

Tonight I came across a YouTube phenomenon not much talked about. It’s the millions of videos uploaded to the platform and *not* picked up by trizillions of viewers but viewed by what looked like a pretty small but dedicated group of followers. In the case of Shawnee Kilgore’s “Company of Friends” that group tonight had just past 30. Not 30 thousand or 30 million. Just 30.

I found that video because I was googling for ‘company of friends’, something that has shaped and influenced my life, even more so in the past years. I googled ‘company of friends’ because lately I just felt that this, the ‘company of friends’, has been my lifesaver.

Over the past couple of weeks, friends and neighbours, companions, have come to the rescue by visiting us, staying with Pádraig, and bringing in the nicest food you’ve ever tasted in your life. It was like a journey through some of Dublin’s most exquisite kitchens: fresh vegetables, grains, pies, tarts, cakes, buns, bread… you name it!

What a change from earlier days when it wasn’t food, but holy items from all sorts of different backgrounds, religions, and beliefs who were just brought in to be touched, left on loan, or given as generous presents. They were meant to prevent the worst and bring Pádraig and all of us healing.

We have come a long way. And yet, we’ve only just begun!