Optimistic

We’ve had a really nice, quiet afternoon and evening. Relaxed, good-humoured, assisted by one of Pádraig’s carers and the regular ‘Monday evening with Pádraig’ visitor, back from holidays.

It was almost beautiful. Something not to be disturbed.

Of course, we know, I know and you know too, that life is not like that, not like that at all. But this afternoon, this evening, we enjoyed the moment.,

Someone I talked to today asked me three times whether I was positive about the future of care for survivors of brain injury. I am, I answered, in situations where you and I, people who truly care, are in charge. Because we will not tolerate mediocrity.

Large systems, large institutions, develop a dynamics of their own and are difficult, if not impossible, to control. And while I care about these, I am not so optimistic or positive about them. And I wonder whether they can be changed at all.

But about what we do, I am a Dreamboater. Not just optimistic, but convinced that, no doubt, no doubt at all, we will succeed in what we believe in: Compassion, justice, transparency.

We will not allow people with a severe acquired brain injury to be left behind and to just rot away or being treated badly, just because they cannot defend themselves. No way José:) Load and clearly and unambiguously.

Iron(wo)man

Honestly? I’m jealous:) A 1.9km swim, a 90.1km cycle, and a 21.1km run – and all of it in a super time!

It was Pádraig’s older sister who, today, became our family’s first iron(wo)man. And she did so well, it was just fantastic. And inspiring. Really.

India

We thought all day that today was Sunday. That’s because yesterday, Friday, was like Saturday. We took off in the early afternoon, had a nice few hours together, and then had that dinner. Late breakfast today, followed be a long walk along the sea, and a snack and a drink in what could be one of the nicest restaurants in the country, with some adjustments.

It turned out that the restaurant served Indian food with some of the most amazing Indian yoghourt drinks, Lassi Mango. And it turned out that Padraig had his first true Indian dish  – and he really did enjoy the experience.

Trying to get a few hours sleep before bringing one of Padraig’s sister to Dun Laoghaire at 5:30 for the challenge of her life. The Dublin Ironman.

Together

We’re on a family night out. And where else would you go but up North?

Being away together, even for a night, is just magic. The idea and the reality. There were many times when we were not just in sheer terror and fear and shock and awe thinking that we might loose Pádraig, we were also split up between Dublin and Hamburg because there was not adequate treatment for Pádraig available in Dublin.

Back then, we were not sure how much of his life, how much of our life would continue, could go on.

Today, I am pretty worn out, weather-beaten, raw inside from wounds that will never heal, but determined and focused and hopeful that Pádraig will continue to have a life worth living and that he will show us the way we need to go to support him and those like him.

Today we are all together, the whole family, in a nice hotel and lovely surroundings, enjoying ‘a night out’.

I’d never had thought I’d be so happy to be up North!

Why

For some odd reason, I’m still really excited about this place I looked at for the first time yesterday. I brought out an engineer and a rehab equipment and centre specialist with me who both shared my feeling that this is a really special place. More visitors tomorrow and then, I think, we will get in an architect and fire safety expert.

There’ll be another meeting with the HSE tomorrow morning which will bring us, hopefully, closer to signing the contract and starting the project.

It is incredible to see all this happening – initiated really by Pádraig, with the support of his friends. That none of this would have happened with that terrible accident. What is the answer to all those questions around the ‘why’? Why Pádraig? Why such a devastating blow? Why at this stage of his life?

RoofTop

For a change, I felt on top of the world! Hey, we all need days like these! Look at this view.

It just gives away a hint of the idea. From here, you can see most of North Dublin and, actually, across up to the Dublin Mountains. For those of us not from Dublin: these are more hills than mountains, but it’s all a matter of perspective, so it is. You wouldn’t notice them in the Alps. Here, they are huge.

The rooftop is part of premises I looked at today. Even the fact that something like this  is available made my heart jump. It might not work out at all, but today it felt like many things started to come together.

And here is the lesson I learnt today. Stuff that seems huge, almost unsurmountable, can turn out tiny if looked at from a different perspective. And even when you really think you’re about to loose your head because a situation, or even life itself, seems to be so unbelievably complex, complicated, unresolvable, and plain hard – the skies can open, the sun can shine, and you can find yourself on top of a building looking out onto the horizon, thinking: well, things might work out after all.

Even it is just for a moment.

Newswires

The newswires are buzzing with activity. One father says he’s had enough and adds: “we need a campaign” (mmhhhh…); another writes on Facebook about how much he could do for his son would the HSE only give him the money they are wasting on agencies; and even the New York Times publishes a comment made by another father (me) on Lu Spinney’s summary of her Beyond the High Blue Air book.

I already mentioned the article in The Journal by Tom Clonan from last week, which was followed up by another interview with him on this afternoon’s RTE’s Ray d’Arcy show with Katherine Thomas. Tom “has had enough” and calls on the LGBTI Equality Movement to rejuvenate their highly successful campaign for Marriage Equality, but this time focusing on Ability Equality. Mmmmhhh… He also says no politician is interested in the topic. I don’t know how much Tom has tried to make contact with politicians – my own experience has been a bit mixed but I have found many of them if not always helpful but at least listening, some of them very supportive and understanding.

A father of a young man with an acquired brain injury wrote on Facebook about his frustration with the health system and the scandal of the abandonment of young people in nursing homes – echoing the issues raised on the RTÉ’s News At One about young people (more than 1,200 apparently) in nursing homes. He is saying that if his family had access to the enormous amount of money paid to nursing homes and agencies for his son, he could look after his son at home, which would provide him with much better care and would cost considerably less.

A bit more on that account in the New York Times and The Guardian (Protecting My Son Meant Wishing for His Death by Lu Spinney on 11 August 2017 in the New York Time). Lu Spinney is the author of the memoir “Beyond the High Blue Air,” from which the essay is adapted. Without sharing many details (and in this case ‘details’ make all the difference) she heavily complaints about the fact that people are allowed to live, or rather: not allowed to die, with a severe acquired brain injury. She is convinced her nonverbal minimally conscious son ‘told’ her daughter that he wanted her to help him die – but the doctors wouldn’t allow it. I found that story so disturbing and the more than 150 (other) comments supporting her view really hard to understand. This is why a shared a bit of Pádraig’s story on the New York Times website, here. (You can click on ‘recommend’ if you like what I wrote.)

Pádraig and us went to have a look at two potential sites for An Saol this afternoon and just made it back home in time for his carers. Two friends called in later, one of them jetting off to Northern India tomorrow morning on a secret mission filmed for TG4. We hope he won’t forget to bring back tea and incense.

Solidarity

It was a huge field. Which means they had choices. But they sat right in front and underneath this digger. – We witnessed this rather unusual cow solidarity movement this morning on our walk to Cloone in lovely Leitrim.They had decided, they were not going to move, they would not allow this digger to destroy their lovely field. They probably knew they wouldn’t stand a chance, really. But they did it anyway. Nobody was watching, there were no witnesses (apart from us), they couldn’t mobilise other cow friends in other fields, the fences were too high. – Cows with principles.

I received an email from a friend in New York asking me whether I had heard of the story by a mother who had lost her son who had suffered a severe acquired brain injury. He had been in a coma and then in a minimally conscious state (MCS). She describes the helplessness of here son. She says he suffered and that he wanted to die. They tried to ‘help’ him but eventually he died from a secondary illness. She advocates that he should have died quickly, at the accident, or that he should have been allowed to die when it became clear that he wouldn’t get better.

In her case she meant that she and her family should have been allowed to end her son’s live because it was too miserable and they felt that he had ‘communicated’ to them that he didn’t want to live. I suppose the fact that he then died from an infection could be interpreted in such a way that he really had given up. (But, there are, of course, other interpretations possible too.)

I found that story deeply disturbing. There are few people in the world who understand as well as I what that family went through. But I find her reasoning hard to follow.

The article in the New York Times: https://mobile.nytimes.com/2017/08/11/well/family/protecting-my-son-meant-wishing-for-his-death.html

The article in The Guardian: https://www.theguardian.com/lifeandstyle/2016/apr/30/assisted-dying-mcs-minimally-conscious-state-lu-spinney-beyond-high-blue-air-son-snowboarding

Magnum

What else would you do on a beautiful summer's Saturday afternoon but to enjoy a Magnum ice cream in lovely Leitrim (we did have to light the fire:), having browsed previously through the obligatory Leitrim Observer.

I forget what it is like here when we are in Dublin. So quiet, so beautiful and carefree. That the mobile signal is terrible and I'm having trouble uploading these incredible pictures is all part of the deal. No rush. Enjoying the Magnum by the fireside. In August!

Art

It’s incredible how art can, literally, move people. Even out of wheelchairs. There was an art installation in Germany that invited visitors to interact with some really famous pictures. And someone who had not really got out of their wheelchair did just that. Aren’t these incredible things to happen? And the fun and excitement are palpable!

Sitting in the airport waiting to catch the plane back home. Over the past two days, I visited one of Europe’s largest and Germany’s oldest and most experienced organisations working with disadvantaged and disabled people. It was like an intensive course on how an organisation grew, what it did to provide the services, the work they are doing today and what their plans are for the future. – About 10-15 years ago, they started to realise that there was a big gap in services provided to persons with brain injuries and have developed several models. We can build on that experience, on what worked and what didn’t.

One of the really significant lessons they said they learned is that it is not advisable to work with large groups, large being around 25 persons. So, our idea to start small seems to be spot on. As is the plan to integrate and ground the project in the surrounding community.

PS: There is an interesting article, written by Tom Clonan, about his view on what the State does for the so-called ‘disabled’, like his son. His conclusion is that he’s had enough. He calls for a “Yes Equality” campaign for our ‘brothers and sisters disabled by the State’. Of course, he has a case. If one thing is missing, it is the idea of how exactly he proposes to get this campaign off the ground and a few more details, like what, exactly, does he want to achieve and, exactly, for whom. I suppose, what I’m thinking is – there are tons of people (and dozens of ‘disability’ organisations) who’ve had enough and who’ve called for a campaign of some sorts; to succeed with what sounds like a huge campaign potentially we have to know, exactly, what we are looking for and for whom. To give you a taste here’s an extract from Tom’s article (it’s also worthwhile reading the comments):

Personally, I’ve had enough. Ireland is the only member state of the EU that has not signed the UN Convention on the Rights of People with Disabilities. Would Irish men and women tolerate a State that detained citizens on aircraft because of their sexuality or sexual orientation? Would Irish citizens tolerate a system that demanded 24-hours notice of travel of the LGBTI community? A State that confined over a thousand LGBTI citizens to an Irish style gulag archipelago of nursing homes? No. So, why impose this on the so-called “disabled”?

I say no more polite lobbying for the “disabled”. We need a radical transition to a rights-based approach to the rights of our fellow citizens who are disabled by a discriminatory State. I’m up for the fight. I would ask all of our citizens, including the LGBTI community, to support us in this fight.

In other words, as a father to a boy who is different, I am asking my fellow citizens to support a call for a Yes Equality campaign for our brothers and sisters disabled by a State that actively discriminates on the basis of physical and intellectual need.

Is Leo Varadkar – Taoiseach for those who “get up early in the morning” – prepared to vindicate the rights of early risers like my son?

Tom Clonan