Want to get into the Christmas spirit? Do you live around Dublin? Then you’ll have to join us this coming Thursday for Wintersong by Candlelight in Our Lady of Dolours, Glasnevin. For a second year running, our neighbouring Parish has decided to organise an event of music, song and reflection. Afterwards, there will be mulled wine, mince pies, hot chocolate and marshmallow in the Parish centre – and a raffle and auction. All in aid of Caring for Pádraig. (The committee are still gratefully accepting prizes for the raffle.)

If you are on Facebook, check out the event page and share it with your friends.

Pádraig had a friend visiting today he hadn’t seen for almost two years, as he has been living abroad. They had a great time catching up on each other’s lives. We assisted Pádraig sharing his experiences and thoughts with his friend. It reminded me how important it is to get him to use and learn about a better communication system which he has but which we haven’t used regularly enough. The visit also brought back home the need for him with people of his age who through sharing aspects of their life with him keeps him in touch with what is going on out there, what young people of his age are doing, what their worries, hopes, and aspirations are. What they think about life and stuff going on in their world.

Am I sad that his life is different, would I prefer if he was more independent, had more opportunities? I could cry my eyes out if I start thinking that way.

But I’m having too many of these moments when tears just shoot into my eyes and my nose starts running even worse than it does already with my cold.

I want to think about the good aspects of Pádraig’s life, the things he can do, the course he is charting for himself. A course that is so different from what would have been the generally accepted no-hope “pathway”. I want to think about the family and friends and strangers who have been supporting him and us to sail down this stream in his Dreamboat. Defying medical “wisdom”.

I have a cold. Pádraig’s carer who usually comes in on a Saturday has a cold (and couldn’t come today). So Pádraig and I took it slow and easy. And we managed. We now know that we cannot just go swimming and manage, we also manage the shower. Talk about a confidence boost.

This afternoon, I went into town to see all the Black Friday bargains that had survived to the weekend. I came back empty handed and reassured that I am not missing much by not joining the shopping frenzy.

Saturday evening is mass time, a kind of spiritual get together of neighbours and people I never really knew – that is until Pádraig’s accident. Now there’s many people who say ‘hello’, and ask how everybody is,

Please don’t forget the Wintersong by Candlelight event this coming Thursday.

This “Breathe in. Breathe out” stuff is a complete waste of time. Where did they get the idea that this is something you need to practice? You need to do a course on? And pay for! I mean: really?

I had to join a weekend course in my first part-time job in adult education in a little town outside of Cologne where they did this as a warm-up exercise and I was convinced that they were all slightly nuts.

The next session on this course was about self-perception. And all of a sudden, we weren’t just breathing together, in and out, people started to tell us, complete strangers, their life stories! “Haven’t they got friends they can talk to about this stuff?”, I thought.

A few decades later, I’m doing a mindfulness course where they’re doing exactly this: breathing in and out, telling each other how they feel about it.

I’m feeling fine.

Pádraig had a good day today, with physio in the morning, a good lunch, a good rest, some more exercise and chat, a lovely dinner and sss

Did you know that the blood vessels that are present in the brain are almost 100,000 miles in length?

Thanksgiving is one of those occasions that doesn’t seem to have been ‘contaminated’ by commerce, a good friend told me the other day. Maybe that is the reason why it hasn’t made it across the Atlantic? There is nothing in it for businesses.

Giving thanks every day, not just on one day of the year, is a really healthy thing to do. Rather than focusing on all the scandals, the rotten systems surrounding us, the emptiness of vanity, the desperate situation so many people have to endure, giving thanks for the love we experience every day, the generosity of our friends and families and, at times, complete strangers, brings balance to my life and happiness.

A good old friend of mine, someone I don’t meet that often, today organised a fundraiser in their office at Demonware for the An Saol Foundation. There was a bake sale, as well as a fantastic display of handmade Irish pottery and brilliant crochet work, up for silent auction – all in aid of the An Saol Foundation.

In addition to their generosity, what really touched me was the interest of the people I managed to talk to in equality and inclusion of those who are still completely marginalised in our society, and who, worse, have no voice and very few advocates marching the streets and lobbying the media and politicians.

Happy Thanksgiving Day to our friends at Demonware and all around the world!

Whoever designed the form didn’t think it through. At least this is my take on it. It’s one of these forms where you think you know what they want to find out but you can see that the questions they ask won’t get them the answers they’re looking for.

Given Pádraig’s circumstances, I understand his answers. He doesn’t think ‘what if’. Like I do from time to time: what if he hadn’t had the accident, what if the driver had watched him instead of the oncoming car, what if he had hit the breaks rather than the accelerator pedal, what if Pádraig had not gone on a J1, what if what if what if what if what if what if…. This is not about what if. This is about now, today, how are things, not how could they be.

So, how are things? Life really couldn’t be that much better, the conditions are good, the important things are there, there is nothing to change over. That is Pádraig’s perspective.

And, man – I so admire him for it.

PS: Sometimes people ask you “where you do see yourself in five years time”? Where do I see Pádraig, what do I see him doing in five years time. When I looked at yesterday’s video, I suddenly had to think of a series they showed on German TV decades ago – and a really iconic scene in Der Seewolf – check out the last 20 seconds of the clip.

Just imagine: world peace, no more fake news, and all nursing home closed up and replaced by suitable accommodation in the community.

Fiction? Fantasy?

More about this later…

First, a video with Pádraig giving a demonstration of the use of a new gadget that just arrived, allowing him to stretch out his fingers and to squeeze his hands, against resistance.

The gadget comes with different strengths’ pulls and balls. So easy. Yet so challenging. Tomorrow we should really try the stronger pulls.

Back to the nursing homes…

According to Philip Ryan, writing in the Irish Independent, nursing homes will be entirely phased out within the next 20 years and replaced by retirement villages, Minister for Older People Jim Daly, said he plans to drastically reduce the country’s reliance on the traditional nursing-home model and move towards keeping older people in their own homes for as long as possible.

While I have not heard anybody addressing the issue of young people living in nursing homes, many of them people with a severe acquired brain injury (sABI), I suppose that problem will be resolved by default, not by intend.

Here is a small sample of news reports explaining why this issue is really a problem.

11 June 2018 Irish Times: Young people with disabilities are ‘being trapped in nursing homes’
Disability Federation of Ireland warns of human rights violations over PA shortage (by Kitty Holland)

31 March 2018 Irish Mirror: Patients as young as 17 sent to nursing homes due to lack of suitable HSE facilities – Over the past decade 242 patients younger than 50 were sent to nursing homes where the average resident age was 83 (by Lynne Kelleher). From the article: “Clinical psychologist Dr Aoife Dwyer, who interviewed young people with acquired brain injuries in nursing homes, said they felt like they were being imprisoned. She said: “They felt like they were being shelved. They have the sense that they don’t belong. They are bored, lonely, many reported that they were depressed. There is psychological impact of the sense of confinement and the sense of punishment as well.”

14 October 2018 Irish Independent: Young people with brain injuries ‘face a lifetime in care homes’ – More than 13,000 suffer brain injury each year but don’t get the rehabilitation they need. (by Alan O’Keeffe)

Is this a national scandal or is it? And, Milli Vanilli, the umpteenth attempt to put together and agree and publish and fund a draft implementation plan for the 2011-2015 (!) Neurological Rehabilitation Strategy has just failed. Again.

Tuesday is swimming day. The first time I went swimming with Pádraig all on my own. I think we both are feeling really proud that it all worked out. The carer that used to come left without warning nor notice. And gave us an opportunity to raise to a formidable challenge. Dreamboaters Ahoi!

What’s going on in the world is equally bizarre and mysterious.

Politicians don’t govern, police leaders lie, bankers loose your money, builders’ housing developments collapse, religious dump hundreds of babies in sewage tanks, and singers don’t sing.

I can’t make any sense of any of it. – Except in the case of the singers.

This day, 28 years ago today, the famous Grammy Award for the best album was revoked, for the first and only time, when the German (!) duo Milli Vanilli (remember them?) confessed: they hadn’t sung on their 1989 debut album..

The scandal cost them their 1989 Grammy for Best New Artist. According to today’s Backstory in the New York Times, since then  Milli Vanilli has become pop culture shorthand for fraud.

So, next time, you come across something shady, and you don’t want to call it ‘fraud’, you could just say: “Oh well, that’s just Milli Vanilli!”

The NYT writer concludes: “We’ll never know if Milli Vanilli was actually years ahead of its time.”

Just in case you hadn’t noticed or heard: today is International Men’s Day. (You probably heard that joke a thousand times: but isn’t every day men’s day?) So Pádraig and I went to an event (“The Future is possible”) organised by DCU’s Equality and Diversity Office where we were greeted by bags with water and sandwiches (“light refreshments”), a DCU “Women in Leadership” brochure, and Tom Clonan who was going to give the talk of the day.

While we were eating our sandwiches, Tom started his talk by stating, several times, that he was a feminist. On International Men’s Day! He then talked the audience through the various stations of his professional life. I turned out that Tom is one of the original whistleblowers denouncing, in his PhD thesis, sexual abuse and rape in the armed forces. He had to fight his former employers with his legal team to establish his credibility. Tom later recommended his legal team to another whistleblower, Maurice McCabe.

There is a part I didn’t quite understand and which I don’t get in other contexts either: why on earth did the women who suffered the sexual abuse and rape in the armed forces never file a formal complaint with the Gardai, the police? Why was none of the rapists ever brought to court?

Following the event, we hang around a little and chatted to a few people, including Tom Clonan. He continued to talk. Something I do at times. When listening would be so much more helpful.

Now, that, after last night, we know that Pádraig can make it into an club, and equally importantly, back out again, Pádraig might go more often. We’ll just have to make sure that the great team of half a dozen+ friends who help out last night will again be able to give him a hand, to get down, and then up the stairs to this most incredible venue right bang in the heart of Dublin’s most extraordinary nightlife on Harcourt Street.

This morning was the first time I remember, that Pádraig slept it out until the very late morning, The way you would if you had been out the previous night until the early hours.

Tonight, we went to the Our Lady of Dolours church in Dolphin’s Barn for Seosamh’s month’s mind mass (it really was a ‘two’-month’s mind mass). On Sundays, they celebrate mass with their parish priest in the Taizé tradition. There was virtually no light in the church, just dozens of candles. There was a tranquility and sombreness I have rarely experienced. The way mass was conducted, the 4-person ‘choir’ with ukulele singing in at least four different languages, how people participated, how the priest included the congregation and how he spoke to us – it was a mass like no other and no surprise that this was the place Seosamh went to. (If you are from Dublin, or know how some people here speak, you’ll appreciate the reference the priest made to ‘denial, or: d’Nile, which, he said is not just a river running through Egypt.)

A real sense of loss is emerging – no more texts saying ‘I’m on the bus’, no more food (from cup cakes to paella) Pádraig had to try – although we feared he wouldn’t be able to deal with it, when he always was, of course. Seosamh will always be with us in spirit and with him, Pádraig will have another guardian angel looking out for him. But Seosamh had encountered and created a role for himself in Pádraig’s life which, given the circumstances, was a brilliant achievement, one we all, at times, struggle with, and one which is probably more difficult for Pádraig’s friends then for his family. That role is empty now.

It was Seosamh’s night. For those of his friends who came it was a reunion. And an opportunity to meet his family. The Club was packed. Half of the people seemed to be musicians, painters and poets. It was an out-of-this-world experience. And Seosamh, although gone now, was right in the centre of everybody’s mind.

Here are two sets of photos, to give you an idea of what you missed.

The first set is from the early days.

The second set is from tonight.

It’s late (again) and my head is still spinning from this incredible day. And I’m sure Pádraig’s head is too. He had an incredibly beautiful night in the Conradh with his friends and with Seosamh’s family.

Living in the moment. Not being captured by the memories of the past. Not worrying about what might happen in the future.

It’s advice that is easily misunderstood as: don’t worry, relax, whatever has happened has happened and you cannot change it, whatever will happen will happen and there’s nothing you can do about it anyway.

I think it means: accept the past with all its memories full of beauty and terror; try hard to do what is right; but don’t despair nor blame yourself if the outcome is not what you would have liked it to be.

Living in the moment does not mean that you should forsake your precious memories nor does it mean that you should stop trying to make the world (or even a minuscule part of it) a better place.

Living in the moment, being grounded in yourself, “serving God and not mammon”, means finding inner and outer peace, it means hard work and constant effort, it means enjoying life, having fun, pushing boundaries.

It’s what Pádraig has been doing for five years now. Each and every day he has taught me how to live. I short, small, slow lessons so that I could stay with him and would not be lost on the way.

I want to share all the practicalities around life with a severe acquired brain injury, the fight for medical care, the fight for social care, and the fight for rehabilitation. But as important all these things are, the most important lesson is that none of us can live without the others, and never will. It is the love and the care