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!

Sundays are usually easy going, lazy, slow. Getting up a bit later, having a long breakfast, a day with no plan.Two friends came to visit Pádraig today whom he hadn’t seen for a while. They had some tea, didn’t eat the exquisite apple tart they had brought with them, and had a great time catching up. Later Pat shared some stories with Pádraig and hit the nail on the head finding the exact right tone and his (subtle) sense of humour. I caught up on sleep.

There are millions of things that need to be done. About a dozen of them quite urgently. And although all this pressure is there, it is not centre stage. Stuff that in an another life would have made it impossible to sleep is less distressing.

It’s strange how priorities change, how what is important is so relative.

I was too tired last night to note some thoughts I had following the lecture by Prof Huxtable. Here they are.

1. Minimally Conscious State
   The one certainty about the MCS is that nobody can predict with any certainty the outcome, meaning that any prognosis made is speculative, including the “no prospect of recovery” diagnosis.
2. Best Interest
   When decisions are made, by judges, about treatment or withdrawal of treatment/support, one important factor, in addition to a ‘living will’ or a ‘lasting power of attorney’, is the ‘best interest’ of the person in question. When determining that interest, in Ireland, judges generally follow the opinion of ‘experts’, meaning doctors, possibly therapists and other professionals. We have seen, time and again, that doctors are not the right persons to determine treatment. To put it bluntly, had we followed the advice of doctors, Pádraig would be dead. Several times (if that was possible).
3. Decision maker
   Decisions about treatment or the withdrawal of it, in Ireland, do not involve the family. In fact, the family does not have any role if the person in question is an adult (child). This is not only what we have been told, this is what we have been given in writing as the official HSE policy. For example, we were told that a carer could decide to call an ambulance to bring Pádraig to the hospital if they thought that was necessary. (Put that into the context of no regulation for the home care sector and no minimum qualification for carers.) For more serious questions, the HSE often (or generally) applies to the High Court to make a person a ward of court, making double-sure the family cannot ‘interfere’. In those cases it is the President of the High Court who decides, taking into account the views of those he chooses to consult – this can include the family. But – how can any person take a decision about the life or death of a person about whom he has received reports but whom he does not know and whose personality, character and current condition they have not experienced.
4. Death and Life
   Judges have had to decide about the right to die. And there are arguments to assert that right in certain circumstances. But – there is also the right to live. And there are, at least, as many arguments to assert that right. The right to live can involve the obligation of society to provide the resources to assert that right (it might have to cover the cost of treatment, for example). And this is not optional, it is a human right that can be asserted by law.

Prof Huxtable said last night in his lecture, and repeated it when he answered questions, that he was ‘sitting on the fence’ in relation to these important questions. In my own, non-scientific and non-legal, opinion, sitting on the fence can kill people.

“A Balance of Opposites? Ethics, Judges and Minimally Conscious Patients” was the talked given by Richard Huxtable, Professor of Medical Ethics and Law, University of Bristol, at the annual Swan Lecture tonight. Here is the abstract:

This presentation reports on research undertaken by Professor Huxtable and Dr Giles Birchley as part of the Wellcome Trust-funded project ‘Balancing Best Interests in Healthcare, Ethics and Law’ (BABEL). The project focuses on the best interests standard, which underpins many decisions made for or with patients who lack capacity. The presentation explores legal rulings about whether it is in the best interests of patients with prolonged disorders of consciousness to (continue to) receive life-prolonging treatment. The courts have long adjudicated on cases concerning clinically-assisted nutrition and hydration for patients in the vegetative state, and they are now increasingly encountering patients in the minimally conscious state. The latter cases are the main focus of this presentation, which will specifically consider the ethical concepts, principles and approaches that feature in the judges’ decisions. We will show how the rulings encompass diverse ethical values – some of which might be expected, but some perhaps less so. We close by asking whether this is a bad thing, as it indicates inconsistency, or a good thing, as it demonstrates an openness to pluralism.

He says he’s sitting on the fence on all the issues that t he raiseing,

It’s getting too late and I’m getting too tired to write. But just a note about two things that happened today. Both have to do with people. There were people who were really really inspiring and supportive, visitors, helpers, therapists. But there was also a person who made me doubt (for a few minutes) in humanity. It’s surprising what effect people can have on you who all of a sudden turn from being friendly to being hostile.

Dis-engagement is my reaction – everything else would be a waste of energy.

There is one cult figure who didn’t die aged 27. He was 46 when he died in a car crash in 1960. It’s the author and philosopher Albert Camus, the man who wrote that “There is only one really serious philosophical question, and that is suicide” given that “This world in itself is not reasonable, that is all that can be said”, It a world reflecting The Myth of Sisyphus, where, “Should I kill myself?” in the face of the absurdity of life is the essential philosophical question. The main concern of his book, The Myth of Sisyphus, is to sketch ways of living our lives so as to make them worth living despite their being meaningless.

Heavy stuff it is.

Why keep trying, why keep struggling, why continue suffering, why pushing that stone up the hill when it will keep rolling down each time you thing you’ve just made it?

Not just heavy, but difficult to answer too.

For me, there is a will to live; there is an obligation to live; and there are the moments to live for. And all that has become so much clearer over the past few years, and even over the past weekend. In an inexplicably weird way the meaning of life reveals itself in all its clarity when life is most challenging and absurd.

Pádraig amazed all who saw him this week. Today, he revealed that his favourite German group was Rosenstolz and introduced one of his therapists to Rammstein – both really well known German groups, though for very different tastes:)