It was Good Friday today 88 years ago today. As everybody gathered around the wireless to listen to the BBC’s 20:45 news bulletin, they heard the newsreader saying:

“Good evening. Today is Good Friday. There is no news.”

That update was followed by 15 minutes of piano music.

Today’s New York Times mentions this in their Back Story and add that “there was some major world news that day, including a typhoon in the Philippines and an attempted raid on an armory by Indian revolutionaries demanding independence from Britain, but it happened too late for the BBC”. They then provide a few headlines from the NYTimes of that day including one about Prohibition violations and another one on gas masks for horses that were doing well in military testing.

(I had heard this story from someone I usually trust a lot, but had not believed that this one wasn’t part of popular folklore.)

Back to the Future – Just heard on the News that last year one quarter of Ireland’s economic growth was based on the sale of iPhones. There are times when you wonder whether the ‘news’ themselves aren’t simply folklore.

In other news…

Pádraig spend a couple of hours today in the Trinity Hotel with a crew filming clips for a campaign to inform about the Assisted Decision Making Act 2015 – which will be enacted some time soon. It assumes that everybody is assumed to have capacity unless proven otherwise. It means that it will be Pádraig, not the HSE who will take decisions on their future, legally, and that others like him will no longer be made wards of court. A huge development that Pádraig will help to promote. Another really important role in his life.

The NY Times concluded with their review of past news of today by saying: “These days, it can seem as if the amount of news is limited only by the time you have available to consume it. But if you need a break, here’s some classical piano.

This morning, Pádraig used the low tech communication device that was prepared for him with input from everybody by some specialists. It’s basically a printed table of content that points to more detailed questions and statements in a small booklet with laminated pages.

“Do you want to talk about your clothes?” Oh my God, not again!

“Do you want to talk about your feelings?” Come on! Maybe I do but certainly not with you!

“Are you hungry or thirsty?” Are you for real? I just finished breakfast!

“Would you like to go for a walk?” YES! — Going into the details, following the pointers into the booklet, and half a dozen questions later we know that Pádraig does neither want to go into the Botanics, nor into the park, nor around the block. What he wants to do is go hiking. So this Saturday, come rain or shine, we’ll go hiking!

So much for taking charge, not just of his life, but of ours too:)

And then… later on… someone had the idea to ask Pádraig to push his wheelchair. First back.

 

And then forward.

 

While listening to really loud, really cool, really feel-easy, rock music.

What a pair of MASSIVE firsts! Moving the wheelchair by himself. Who would ever have thought this would happen one day? Deciding where to go!?

It’s massive and it is definitely the way to go. If you ask me.

Rehabilitation is not just about clinical stuff, therapies on this and therapies on that. At its heart its not about ‘therapies’ at all. What it is all about is finding a way back into life, participating, being integrated, taking part.

That’s what Pádraig did tonight in a hotel just across the street where a really interesting, lively and at times really witty debate chaired by Vincent Browne took place, involving, amongst others, one of our local TDs, Mary Lou McDonald. She remembered Pádraig and came over to say hello in such a friendly way that both herself and Pádraig didn’t stop smiling and laughing.

There were some historical figures present, like Nicki Kelly, who had been sentenced in 1978 for his (alleged) participation in the Sallins Train Robbery and about whom I first heard when I saw one of the famous “Free Nicky Kelly” graffitis in Cork where I visited the love of my life at the time. Someone had let his sense of humour loose and had added, under one of those graffiti: “…with every box of cornflakes!” Unbeatable.

Stir fry. Nothing special about it. Noodles. Carrots. Mushrooms. Mini corns. Beans. Crunchy. Not soft. Sizeable chunks. Not minced or squashed. Nothing special about the stir fry (though a big ‘thank you’ to the brilliant cook who prepared it:) — but about Pádraig eating it today. A big plate. With no problems whatsoever.

During lunch, we watched self-made documentary. I had searched for “Into the Wild” on Netflix. What it threw up instead was this film called “Expedition Happiness” about a German couple and their dog renovating an old yellow school bus in the USA and driving it through Canada to Alaska and then back down to Mexico.

It sounds like everybody’s dream come true. It’s something I’d so much would like to do with Pádraig. In my mind, this would be the ultimate neuro rehabilitation journey. Participation. Integration. Thinking that, instead, we are struggling here every day, waiting for an HSE office that is waiting for another office to give the go ahead who, in turn, are waiting for another HSE office to agree to the go ahead, who, in turn, need permission from another level — sounds almost insane. And I’m not even sure if I have all the levels listed here — all that more than a year after the go ahead was officially announced by the Minister of Health himself as well as the HSE.

I had to think about our idea of going to Alaska.

Looks like we won’t be doing it this year. One of us here will have to get better first. But we will go.

“Strong. You can do anything. You can go anywhere. Money, power is an illusion. It’s up here. You can be here. Me and you.” (Christopher Mccandleuss)

PS: One of Pádraig’s friends called in this afternoon for a few hours. The second day in a row his friends were with Pádraig. It is truly outstanding how they keep in touch and maintain their friendship. Something that is probably more important to Pádraig than anything else.

President Higgins makes impassioned plea for future of Irish language, reports the Irish Times. Every community expresses its basic values in the way in which it treats a language, President Higgins tells rally. The Uachtarán na Éireann today joined Pádraig who went out to celebrate the Irish language with his friends at “Beo” (Alive).

It was branded as an historic event. It was – even at a very personal level. Because this was Pádraig’s very first event that he joined without us, without any carers or any other ‘professional’. It was just himself with his friends. It was amazing. Really. For him to be there with the people he values so much, those he spent the best time of his life with, for them to walk with him down from Parnell Square to Merrion Square – what that means is hard to put into words.

At the end of that long walk, there was a huge party in Merrion Square with one of the top acts being Kila, the band he likes so much – and to be treated by his ‘old’ friend from this fantastic band, unbelievable. On the way home, we met Marcus who wrote the poem and song about Pádraig’s journey at a time when he hadn’t met him.

 

It’s a real long way from those first days when we feared for the worst. This is ‘Beo’ at its best!

‘Sans Parent’ – a very significant first!

Hut ab!

We knew Pádraig could move his leg forward and backward when he is sitting in his chair. We knew he could push and pull his legs against some resistance, for example when we were holding our hands against his legs and asked him to push against our hands.

But today, his therapist brought in a stretch band, an exercise band that stretches when you pull it. Seeing Pádraig pushing and pulling his left leg and his right leg against the resistance of this blue stretchy belt, however, was another really brilliant demonstration of how much his body control has advanced over the past months. It was another first. Not quite black belt stuff yet, but pretty close!

After these pretty cool exercises of pushing and pulling his legs against this blue elastic belt, Pádraig continued with spelling games and a speech and language session.

Is all this extraordinary?

If it was.

It shouldn’t be.

You know what it is like when you are waiting for something that should be happening any day now…. the tension just builds up and it’s hard to think of anything else. We’ve been waiting for some weeks now to hear from Dublin City Corporation about our application to set up the An Saol Living Space on the top floor of Creation House, the old Smurfit printing press. The decision is imminent, but hasn’t been communicated. One sleepless night after the other!

I spent the afternoon attending a meeting of the Neurological Alliance Ireland (NAI) discussing their contribution to the Implementation Plan for the 2011-1015 Neurological Rehabilitation Strategy. I know what you’re thinking. I agree. It’s 2018 and we’re discussing an implementation plan for a strategy that was published in 2011? “We need our heads examined” was a campaign run by the NAI recently. Don’t get me wrong. All the work the voluntary sector is doing under the umbrella of the NAI is outstanding. But, what I am missing is the sense of outrage, the revolutionary spirit,  the common sense that would make us shout out, at the top of our voices, that all this is really pretty insane. – On the other hand, all (professionals) agreed that progress is being made, thanks to the extraordinary efforts of those involved.

While I was at this workshop, Pádraig went to an event about the Irish Language in DCU. There is proof, every day, that Pádraig is participating in life, that he has interests, that he has fun, and that he is living. And, taking the risk of repeating myself ad nauseam and of boring you to death, the fact is that if he had been transferred from Beaumont to a nursing home, he would most certainly not be where he is today.

The truth is that we could never have done this on our own, not without the help of so many people; and not without Pádraig’s unbroken spirit and determination. The truth also is that many sABI survivors, like Pádraig, are abandoned by the system and are not getting the help and support they need, in my opinion, violating their very basic and universal human rights to a life in dignity and respect.

Talking about human rights… On 07 March 2018, Ireland ratified the UN’s Convention on the Rights of People with Disabilities (UNCRPD) as the last country of the European Union, eleven years after it had signed it and after most other states, including North Korea, had ratified it. However, Ireland did not ratify the optional protocol that would allow Irish citizens to complain to the UN if they felt that their rights according to the convention were violated. A decision the Disability Federation of Ireland called ‘ridiculous’.

When I got up this morning, I remembered in horror that last night, I had finished, all by myself, a whole tub of ice cream. I also remembered that it had felt really good when I did it. I had opened the tub just to get a little bit of the taste, cold, creamy, refreshing, filling ice cream, rounding up dinner. – Have you ever done anything like it?

I blame the long run of last Sunday and the drain on my body for my craving of the sweet, sticky, full-of-calories stuff. Wholesome food, healthy and sugar-free is what one should it.

Should. But doesn’t. — Seems to be a theme in life. — Should. But doesn’t.

I’m sure people have written books about this. How is it that we know what is right but don’t do it?

Pádraig had a double music session today. Thoroughly enjoying both of them. The first one in the large auditorium of St Pat’s College (now DCU) at lunchtime with a range of different styles of music. Tapping his feet along the traditional music, moving his mouth and lips when he recognised songs by the choir. Maybe that session served as a warm up because he did really well later in the afternoon with his music therapy, holding the rhythm of the songs over a long time, tapping his feet against a tambourine.

We had a birthday in the family today and all got together in the evening to have a really nice meal, followed by a bit of singing in German/English/Irish (all the same song:), and the birthday cake. Being together, sharing the same food, remembering who had been around at the original birthday and how it all happened. Checking our own memories against that of others. Re-affirming and consolidating the ‘true’ story of that birthday. Magic.

That’s how it should be. Should.

You wouldn’t guess what this is. I had never in my life seen one. Not even heard that they existed.

The other day, I saw one for the first time. A small cabin that moves up along a pair of rails into the room on top. When the lift is upstairs, you wouldn’t see in the downstairs room that there was a lift, unless you were looking for it. It’s a brilliant option if you don’t want a big extension but instead use the upstairs with a wheelchair.

We went swimming this afternoon and Pádraig floated in the water for the first time almost by himself, just supported by some floats. He relaxed almost completely and, also for the first time, used his arms and hands to move. And then there was, of course, the walking across the pool bit.

I have been thinking more about the necessity of holding people to account who ignore the needs of persons with a severe brain injury.

Toddler exposed to aggressive care in creche awarded €25,000 damages.

But what about patients who get injured, get dropped feet, and contractions – purely because of lack of appropriate care?

It was a long, very full day today. So many things happening, I can’t remember half of them. What I do remember are just a few things…

The kindness and generosity of people I hardly know but who I feel I have known for years. It’s something I had never had the privilege to encounter ‘before’. It’s almost out of this world but more real than a lot of the stuff people call the ‘real world’.

When a new health professional came to the house today and said it was unbelievable: reading Pádraig’s file and meeting him was as if they were dealing with two different people.

The incredible determination of young people and their families to get through the toughest of times, supporting each other, not taking the ‘default’ as an acceptable ‘solution’ when they are going through the brain injury wards in Irish hospitals – having met one of those families again today, traveling back and forth in my own memories, knowing that leaving them without the support they need is, at the best, negligence.

Having had a meeting with professionals who are going to help us to refurbish premises for the An Saol day centre in the FABrík in Glasnevin.

Not having heard from the state agency who has promised to fund our project, for months without an explanation.

It’s mind-boggling.