It’s Jimi’s song, I just wrote it.

Bob Dylan

46 years ago, Jean-Michel Jarre published Oxygène IV, one of his most successful singles. His latest, 22nd, album is called Oxymore, recorded using multi-channel and binaural rendering for spatial audio distribution technology. – WHAT is that???

Jarre was also involved in the design of a new underground concert venue in Paris with 171 triangular prisms that can reflect, break or absorb sound, depending on the desired sound effect, produced by 339 loudspeakers. Performers can thus change the sound experience from that in a cathedral to one in a small kitchen. An incredibly technical and advanced installation for the most incredible concert experience.

In an interview with German Radio, 74 year old Jarre says that stereo will soon become as obsolete as gramophones and there will be 360o space for music in all spaces that we move in, including cars. While many of his concerts were, so far, in addition to the music, also huge visual installations, he now asks his audience to close their eyes and produce the cinema in their heads.

Truly amazing technological changes are happening in the way music is offered to us.

But the experience of creating pictures in our mind while listening to music isn’t really new or as revolutionary as Jarre seems to believe. I frequently close my eyes when I listen to music. Many people I know do. That is one reason why music is so powerful. We can interpret it and create our own different experiences with it.

Even with one song when it is performed in different ways by different artists. Like the song that captures a conversation between a thief and a joker, written by Bob Dylan, but really made famous by Jimi Hendrix. All Along the Watchtower is one of my favourite songs. I would struggle to explain why. Although I understand the words, I couldn’t explain their meaning. It just resonates with me. And I’d agree that it is probably more Jimi’s than Bob’s song. For no reason. It just feels like it.

You don’t even need music to create your own experiences. Sounds can do it. Smells, touch and textures.

A bit like this morning’s experience out in town. It wasn’t the breakfast, pretty standard sausages, toast and eggs, that made the morning special and truly enjoyable, It was the sun flooding the Dunnes Stores café with light, the warm sun touching our skin. It was the sound of the voices in the background and the clicking of the cups and the cutlery reaching our ears. It was the smell of food, people, and very different surroundings getting up our noses.

I’m sure we had different experiences and were in different ways receptive to where we were and to what was going on around us.

In a way, it was like a song, like music, that we listened to, sometimes with our eyes closed, producing the cinema in our minds.

Enjoying that song that was written for us by others.

Resilience is accepting your new reality, even if it’s less good than the one you had before. You can fight it, you can do nothing but scream about what you’ve lost, or you can accept that and try to put together something that’s good.

Elizabeth Edwards

There are a few things wrong with Elizabeth Edwards’ view of things. For example: I don’t think you have to, or even can, always accept a new reality – but you can learn to live with it; then: it’s hard to say if a new reality is less good rather than, in a strange and surprising way, maybe even better than the one we had before, or we expected for our future.

But she is right when she says that there is no point in kicking and screaming about something we won’t be able to change; that we should make the best out of what we’ve got – which mightn’t be as bad as it seems at first sight.

Pádraig received a late Christmas present, a cool t-shirt with a saying in Irish written on it, when he came back to the An Saol Centre after Christmas. He smiled and was as happy as I had seen him in some time. It was contagious. No words could have expressed a warmer thank you, gratefulness, and appreciation. Here were people who mattered to each other. They were deeply connected and understood each other without a word spoken.

During the week, I came across another quote I found tremendously funny. It’s by Gillian Flynn who wrote Dark Places. It describes in a brilliant way how we should deal with situations and people who cause us trouble for no reason; who do not connect with us at all; who completely lack common sense and seem to thrive causing havoc in our lives.

I am not angry or sad or happy to see you. I could not give a shit. You don’t even ripple.

While I like the attitude, I haven’t managed to practice it fully. People and their actions still ripple for me too often. But I’m working on it.

Like the lack of respect, the lack of care, the lack of common sense so blatantly evident in the treatment of those who cannot speak up for themselves.

And my inability to change any of it.

Thing is: those ripples are distracting, to say the least. At times, I find them infuriating. `They always suck up our energy.

A doctor throwing bones from their patient’s skull into the bin and sharing that with his patient’s parents. A rehabilitation expert asking for evidence of the benefits of physical exercise. A minister not answering letters and messages sent to them. A physiotherapist saying that a wheelchair for a patient in their care should not be provided because of the severity of their injuries. A judge resolving differences between a family and a care facility by making the family’s child a ward of court, removing all rights from the child and the family.

We should not be angry or sad, and surely not happy, to see them. We will never change them. Any time spent trying to make them see reason and justice are a waste of time. They should not even ripple.

Instead, we should do the best we can for those we live with. Spend our time, efforts, and energy for their benefit.

Yesterday was, for a while, a really nice sunny winter’s day.

It’s Swan Lake in Dublin. In this case, the Royal Canal.

No ripples.

Just the Auld Triangle going jingle jangle all along the banks of the Royal Canal.

If we believe in nothing, if nothing has any meaning and if we can affirm no values whatsoever, then everything is possible and nothing has any importance.

Albert Camus, The Rebel

No better way to begin the New Year than going out to the 40 Foot for a dip. We thought. In the old year. Really good idea.

In the New Year, on the water’s edge, we nearly had second thoughts.

It just felt unbelievably fantastic when we got out. Pure beauty.

Best thing I’ve done this year.

If I didn’t know before, I learnt it today: there’s nothing you can’t do.

We didn’t go for a long swim. I just dipped in. There were boundaries dictated by the swell and the currents. But that was ok.

No need to worry. Everything is possible.

You can feel the happiest in the freezing cold.

So good that we thought: why just do it at the beginning of the year? Why not more regularly?

Live a happy life, forget about those tired old New Year resolutions you’re renewing every year. They don’t have any meaning. Nothing has. Then everything is possible.

I’m feeling good about life and our way of living it.

Happy 2023!

Can we move the Japanese Ambassador to four o’clock tomorrow?

The Prime Minister (Hugh Grant) in: Love Actually

This is my favourite scene in my favourite Christmas Movie. Dance as if no-one was watching.

Another scene I like is Karen’s answer to her daughter’s revelation that she is going to be one of the lobsters in her school’s nativity play: she asks her, somewhat incredulously, whether there were really more than one lobster around when little Jesus was born? – Her daughter has no doubt that there were several. Why else would they have the lobsters in the nativity play?

There are no limits to creativity and to imagination.

We were all a bit tired this week and somewhat under the weather. So rather than having the session in An Saol, Conor came over to the house and tried out mark 2.0 of the enhanced handshoe mouse with Pádraig.

I think that he is on to something quite extraordinary.

I think that there are few people who really have a wonderful, peaceful, happy and relaxed Christmas.

Christmas brings families together for days who normally would not spend more than a couple of hours together. Christmas is a very sentimental time when it’s easy to think back and remember times that were always so much better, so much easier, so much safer, and so much happier than the times we live in now. When people were around who looked after us, made us feel safe, loved us to bits, and took us the way we are. Nonetheless –

I wish you all a very Happy Christmas and a peaceful New Year 2023.

Thank you for all your support, love, friendship, and fun.

We made this year. We’ll make another one. Together.

And if it all gets a bit too much, we’ll just move that meeting with the Japanese Ambassador, or with whomever, from tomorrow afternoon to some other future date. Actually.

Friendship improves happiness, and abates misery, by doubling our joys, and dividing our grief.

Cicero

Pádraig was able to invite his friends again this year for a Christmas get-together last night, for the first time in three years. And the evening was magic, for all who joined in. There were nice drinks, nibbles, and even songs shared between all.

Last week saw another highlight. We had organised a DEXA scan, a bone density scan, that is needed to start treatment against bone loss and osteoporosis. People in wheelchairs are at great risk of osteoporosis. Neither Pádraig’s GP nor ourselves could believe when the results came back as normal. Continue with the calcium supplement and whatever exercise he is doing in An Saol was the advice of the GP.

Extraordinary.

Pádraig and I gave our first joined presentation last week at the Mental Health Commission’s first HR Training Day. We were ‘amateurs’ amongst the ‘professionals’ and the only representatives of the people the MHC was set up for. We weren’t told why, but my guess is that it was because of Pádraig’s involvement in the MHC’s and the Decision Support Service’s (DSS) public information campaign.

Our hope was to demonstrate the importance of the DSS for us and the importance of the very long overdue commencement of the 2015 (sic!) Assisted Decision Making (Capacity) Act.

I hope we were at least partially successful.

I promised Pádraig and the audience that next time, he would have a more active involvement on the day.

Pat and I had been looking for cheap flights to Spain and found one on Ryanair to Lanzarote.We staid there for just two nights and experienced what we nearly cannot experience anymore, although we tried very hard.

Perhaps it is impossible trying to escape to what very much seemed to be unreal. With other people who seemed to be unreal.

It was a bit like watching a movie. Long-ish, yes, but we knew it had to end soon.

The warm weather, the warm ocean, the extraordinary sunsets, we, all on our own, were never really on our own. It’s hard to describe but you might know what I am talking about.

Friendship improves happiness, and abates misery, by doubling our joys, and dividing our grief. The old man got it right

The best way to predict the future is to shape it.
(Der beste Weg, die Zukunft vorauszusagen, ist, sie zu gestalten.)

Willy Brandt (1913-1992

That requires initiative, a sense of responsibility, curiosity, energy, risk-taking, and courage. Maybe a sense of humour. Definitely inclusion and participation.

Pádraig is shaping the future of inclusive and participatory life and living for people who have suffered a devastating brain injury. He has demonstrated that what is normal for healthy people can also be normal for those whose life plan was adjusted.

Thinking about it: have you ever noticed that most things we don’t even think about anymore all of a sudden become very special, even exceptional or impossible to pursue, once someone with a severe brain injury wants to claim it?

Like

• Physical Activity – the Romans knew: mens sand in corpora sano; the World Health Organisations knows that everybody should do at least 150–300 minutes of moderate-intensity aerobic physical activity.
• Risk Taking – jumping off a cliff with just a rubber band on your ankle, diving with sharks, or climbing up some of the highest mountains on earth without oxygen are all accepted risks for fit and healthy people; they are being admired for being so brave to risk these mad adventures
• Games – one of the world’s biggest industries where people experience adventures not easily accessible to them otherwise, like flying a plane, climbing a mountain, or driving a really fast car using virtual or extended reality.
• Music – brings back memories, motivates you, relaxes you, helps to concentrate, makes you move and dance
• Tastes, Smells, and Texture – all those sensory experiences, memories and expectations of far away places, summer holidays, winter walks, the wind in your hair, the rain on your skin
• Company – being with your friends, meeting up, getting to know new people, being with people of your age, sharing your interests with them

BUT

If you suffer a serious accident and suddenly cannot pursue and experience the above anymore on your own, require support, then, all of a sudden, you need scientific evidence-based studies to prove that it is in your interest to continue doing what you always did and what others do every day.

Seriously.

And it’s getting worse.

If those experiences and activities are not described in government or health services strategies then pursuing them won’t even be be considered anymore by the system that you thought was there to help you along when you needed it.

How do I know this?

I didn’t until I was told last week by international (and national) expert evaluators of the An Saol Foundation’s Centre.

And until I spent three days at Germany’s biggest, most prestigious and most important Neuro Rehabilitation Congress.

Without a person affected, a rehabilitation customer, a service user, in sight.

It was “all about me without me“.

However, I also made great new contacts, interesting new friends, and learned about new products and publications.

It is clear, though, that Willy Brandt was right.

The best way to predict the future is to shape it.

In fact, the only way to look forward to a future where it is not the exception, but the norm, that those whose life has changed from literally one second to the next, will receive the support and services they need, as a matter of course, to do what is natural for us and what was natural for them before their accident – the only way towards this future, is to shape it ourselves.

I am not what happened to me but what I’ve decided to be.

Ich bin nicht das, was mir passiert ist, sondern was ich beschlossen habe.

Carl. Gustav Jung

Sometimes, I’d like to be on my own. Say goodbye to all those annoying circumstances and people, and live in a cave or on a mountain or on a desert island. In quiet.

At times, that feels like an attractive option.

Sometimes, I blame others, the world, and the universe for how disorganised, selfish, non-caring, and ignorant they are. I question how God can possibly allow people to kill each other on an industrial scale or ignore the terror inflicted on people who have suffered horrific injuries.

Blaming others, projecting blame, is Psychology 101 taught to every first year psychology student, a friend who is in the know once told me. Apparently, it’s something we all are prone to do.

Sometimes, I just feel like giving up, giving in. Eat ice cream, have a glass of wine, doze off

But – and I bet you knew this ‘but’ was coming – there are times when it becomes crystal clear that it is much more exciting, much more energising, and much more impactful to find strength in community, to take responsibility for who you are and how you live, and to lead an active, healthy life.

Last week was one of those occasions. Here is why.

We were at the An Saol Foundation’s first ever Advent Fest of Hope and New Beginnings with about 80 friends of the An Saol Foundation. A fabulous evening hosted by the Lord Mayor of Dublin Caroline Conway in the Oak Room of the Mansion House. In her welcome, she praised the work of the An Saol Foundation, the families and the staff, who, she said, finally were offering those with a severe Acquired Brain Injury an environment for Life and Living with their injuries.

Some of Ireland’s finest musicians created a truly magic atmosphere, including members of KILA, Paul Noonan of Bell X1, Matiú Ó Casaide and the Crew of the Dreamboat. The families really enjoyed a night out getting into the pre-Christmas spirit.

There was outstanding physical exercise for Pádraig on the rings and using an expandable rope that he used for ‘rowing’ like an olympian. It’s an exercise you might do in a gym yourself. For someone like Pádraig it is still very special, something that not many physios would help him to do. Incredible but true. He will make this un-special, another ‘normal’ exercise for him to do.

And then, there was Pádraig’s first day of paid employment since his accident – about time, you might say. Taking into account that he is now over 30, he should really start making a bit of a living for himself, wouldn’t you think?

Sometimes, the world seems to collapse around us and we feel as if all agency was removed from us.

But then, there are times when we feel that we are not what happened to us but what we’ve decided to be.

Last week, there were times like these.

With a little help from our friends.

We are all in the gutter, but some of us are looking at the stars.

Oscar Wilde

This quote by Oscar Wilde is one of Pádraig’s all time favourites. I guess it reflects his approach to life pretty accurately.

Personally, I also like True friends stab you in the front. It’s so funny!

I’ll come back to Oscar in a minute.

Last week was a week of music and amazement.

It started with a brilliant traditional music event in a packed Church, with hundreds of people, and almost an equal number of candles. Maitiu, a friend of Pádraig, had organised it. He had also reserved seats for us in the first row. He had not told us that he would perform a rendition of Dreamboat, following an introduction about the song and its origins. The evening was two hours of magic – helped a little by the Glühwein we all were offered as we entered the Church.

During the week, three therapists from the Northwest of Spain worked with Pádraig and other clients in the An Saol Foundation Santry Centre. They had brought with them many years of experience in working with neurological clients, and they brought a focus and an energy with them that was truly inspiring.

The UCD PhD student (and music technology lecturer) working with Pádraig had spent a lot of time working on a device that allows Pádraig to play music, using a ‘handshoe mouse’ and three of his fingers. What amazed everybody was that Pádraig demonstrated very convincingly how he can not only use three, but all five of the fingers of his left hand independently. He played music, he repeated the music and the rhythm of what someone else had just played. It was amazing. But what was really beautiful to watch and to feel was how happy Pádraig was to play to the rhythm of a song, to join in and to become part of a little orchestra – and to make all of us in the room so happy.

We finished the week with a brilliant concert by Bell X1, Pádraig’s favourite band, in Vicar Street.

However, the highlight of the week was the arrival of Oscar, Pádraig’s first nephew, and our first grandson. So far, I have only seen him on pictures and videos. He is only gorgeous and we cannot wait to see him in person. It will take me a while to get used to the thought that I am now a grandfather.

The future looks bright and exciting. Even from the gutter.

Roma locuta, causa finita

Augustinus, 5th Century

“Rome” has spoken – the case is closed and that’s it: “Rome” being the institution or the person in charge, in a position of power. It used to be the Pope or a Monarch. Nowadays, it is a Court, a Government; in a medical context it could also be a Consultant or specialist. And content doesn’t matter. What matters is authority derived from a position, not necessarily acquired by consensus, knowledge or experience.

I like the word “Basta” and the concept it represents: that’s enough. I’ve had it. That’s it.

There really is no basis for anybody telling me (or anybody else) what is good for me, or what is in my best interest. For telling me that what I am doing is dangerous. For telling me that my decisions are wrong. Or for telling Pádraig how to live his life. Because they don’t “know” how a life with a severe Acquired Brain Injury should be lived.

No decision about me without me. No-one knows better what is good for me than myself. Basta.

Why on Earth do I have to explain why those with a sABI should follow (and that some of those with a sABI want to follow) the WHO recommendations for all adults: to reduce sedentary behaviour and to increase physical activity?:

You can look it up yourself, but the WHO recommends a minimum of 150 to 300 minutes a week of moderate-intensity aerobic physical activity.

And apart from physical activity, why does so little of what we take for granted ourselves apply to those with a sABI? Like having fun, being in good company, going for the exciting stuff, being curious, being confronted with mental challenges, humour, listening to old and new to music, checking out the news, sharing gossip — the list is endless.

Basta having to explain the obvious. We have more important things to do. We don’t have all the time in the world to bring everybody with us. Why not work with those who see the obvious? What do you think?

Here is a bit of good news coming from those who see the obvious. Pádraig is going to participate in a campaign to promote the newly established Decision Support Service and the Assisted Decision Making (Capacity) Act. The people organising the campaign sent an email to Pádraig with the terms and conditions of his participation, a contract, including a fee proposal.

His first job offer since his accident.

I’ve got that feeling that there are many more in the pipeline. Basta with explanations. Pádraig understands what he needs, what he wants and what the purpose in his life is. While it might be difficult for everybody to understand this —

I feel like saying Roma locate, causa finita.

We have to get on with our lives.

There are three kinds of men. The one that learns by reading. The few who learn by observation. 
The rest of them have to pee on the electric fence for themselves.

Will Rogers

Will Rogers was born as a citizen of the Cherokee Nation in what is now Oklahoma. At one stage, he became Hollywood’s best paid actor. He died in 1935 when his small plane crashed in Alaska,

When I first read his quote, I thought that Will must have looked at “the rest of them” as the stupid ones. Now, I am thinking that the ‘stupid ones’ might be the ones who really know because they have learned by doing, by experience. What can you really learn, second hand, just by reading or by observing others?

Many people told us ‘facts’ about Pádraig’s future life, about our life, following his accident. An acquaintance recommended Plum and Posner’s Book on Diagnosis and Treatment of Stupor and Coma. I wanted to know what Pádraig’s chances of recovery were. I asked the doctors treating him almost every day: what next?

Now I know that reading books and asking doctors to find out whether and how Pádraig was going to recover was always futile. Now I know that we would not even have agreed on what ‘recovery’ means.

The books said that with his kind of brain injury, statistically, there was only a negligible chance of survival. The doctors were talking about an intolerable life and organ donation.

I had to pee on that fence for myself to learn that what we did was not supported by everyone. It was not supported by a professional diagnosis. At times it felt like as if someone had switched on the current on that fence to make me feel what it meant to go against the current (no pun intended).

There is another Cherokee saying:

Give me strength, not to be better than my enemies, but to defeat my greatest enemy, the doubts within myself.

We, including Pádraig, are well on the road to recovery. We have no doubts that we are living our lives. In a different way than we had ever anticipated. So what?

We are learning by doing. I am learning to distinguish between fences that are safe and those that aren’t. There will never be certainty. But it is worth trying and taking risks. Defeating my greatest enemy.