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:)

Had I not been there, I would have found it hard to believe what happened this morning at what was one of the most energetic, positive, fun-filled, and ambitious therapy sessions so far. We were four, in addition to Pádraig, and at the end of that hour, or hour and a half, we all felt we had done not just a bit of really hard work, but that we had achieved something really significant.

The videos show how Pádraig is able to push his legs (note the plural!) up against a ‘weight’, in addition to gravity, when he is lying on his stomach. This would have been almost unthinkable a year ago. And the videos provide just a glimpse at what happened this morning. We, and especially Pádraig, had every reason to feel such a sense of achievement. It was a very special, really happy morning!

The best ever concert in rock history, without any shadow of a doubt, must have been The Last Waltz by The Band on 25 November 1976. Thankfully, it was recorded live and has become one of the absolute classics. That’s where I came across Ophelia first. In his song, Robbie Robertson was asking –

Boards on the window
Mail by the door
What would anybody leave so quickly for?
Ophelia
Where have you gone?

Ireland closed down today because of the ex-hurricane Ophelia. Schools will still be closed tomorrow. It was as if time had stood still. As if nothing else was happening in the world but this storm. It reaped havoc, hundreds of people are out of electricity, people even died – as predicted by the media yesterday. Today watching the TV, listening to the news was like watching reality TV. It was happening as we were watching it. Dublin’s streets were deserted, shops were closed, people stayed in their houses hardly anybody went to work, following the advice by the government not to go out.

This storm was an event.

On other days, the news are equally desperate, full of disaster: murders, bombs, threatened annihilation of the world by maverick politicians, police corruption, health system failures, housing crisis, and the likes. But Ophelia was special. One big bad thing and nothing else. For an entire day. Today, Kim Yong-un could have launched the entire missile reservoir and we wouldn’t have heard anything about it. Today was about Ophelia and nothing else.

But soon it will all be forgotten and the attention will  shift to the next disaster. Ophelia, where have you gone?

Life can’t be about Ophelias. About headline disasters. It has to be about the every day struggle that so many of us go through, it has to be the courage of so many people making the best of their lives even when they feel they can’t take much more, it has to be about the generosity of heart of people who reach out and offer a helping hand, every day.

I’m saying this, because I am getting through a tough time as so many others are. And I’m saying this because I would never be able to survive these times without that helping hand.

Pádraig was delighted to meet his new carers (from Germany) today; to experience the storm of the century; to use his standing frame; to experience new food and new textures; to live. Pat is also getting better, though she is still very sore.

Tomorrow, we’ll ask ourselves: Ophelia, where have you gone? While continuing with our boring, every day struggle, feeling the pain, having fun, feeling despair, laughing about the twist and turns of our lives, being happy and fortunate to be in the company of Dreamboaters.

The weekend was challenging, mentally and physically, with as good as no help available via all those hours allocated to Pádraig through his home care package. Although we had been told that Pat was entitled to some help that did not materialise either.

On the positive side, Pádraig’s new carer arrived from Germany this evening and will start tomorrow.

Just heard that the country will come more or less to a stand still tomorrow because of storm Ophelia. First time ever such a serious storm is going to hit Ireland.

Not sure whether it is the ‘Saturday Night Fever‘. Whatever it is, it keeps me awake. I can’t sleep. When what is going on stops, it takes me time to slow down and rest.

Pat keeps getting better. So is Pádraig. Each at their own pace. The days have never been as full.

I was reading a story to Pádraig tonight that ended with one of my favourite sayings: the ark was built by amateurs, the Titanic by professionals. Meaning that those who succeed are often those who don’t know what they’re up against but know what they have to do.

Isn’t that comforting?

Everybody has their favourite time of the day. Donovan liked the “morning when we rise” the best. Gerry Rafferty was a night owl but got “a little lonely when the sun gets low“. We were over the moon with joy this afternoon when Pat came home from the hospital. – Which song would best reflect Pádraig’s and my pure joy, reflect the afternoon that was in it…?