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.

A man will be imprisoned in a room with a door that’s unlocked and opens inwards; as long as it does not occur to him to pull rather than push it.

~ Ludwig Wittgenstein

Last week, I met a mother in the car park of the airport filling station because that was the easiest place for her to find. She had driven 200km from the West of the country to visit her brain-injured adult son who had been placed in an institution for a six-month rehab stay – eight years ago. Since then, she has tried to get her son back closer to home. She has complained about the neglect and abuse her son experienced in his placement. She feels her complaints have not been followed up properly and she is being ignored. She is desperate.

Earlier this year, when the private company running the placement threatened the HSE to discharge her son, they had problems dealing with his family’s complaints, he was made a Ward of Court under the 1861 Lunacy (!) Act, despite the fact that the 2015 Assisted Decision Making (Capacity) Act was about to be commenced. The Ward of Court proceedings were ‘ex parte‘ (referring to a court application brought by one person in the absence of and without representation by, or notification to, other parties – though the mother was later allowed to be represented as a ‘notice party’); ‘in camara‘ (only officers of the court, the parties to the case and their legal representatives, witnesses and such other people as the judge allows are in the courtroom while the case is being heard); and under a Section 27 ruling (meaning that any reporting of the case does not include details such as would permit the medical condition of the person being the subject of the proceedings to be identified – all in the ‘best interest’ of the person concerned, whether they agreed or not).

The result of these Kafka-esque proceedings was, not surprisingly, that the Court agreed with the HSE. Her son was made a Ward – meaning he lost most, if not all, of his rights, including the right to complain. And it is now legally confirmed that his family has no say or rights whatsoever in relation to any aspects of their son’s life.

The ‘best’ part: these proceedings will be paid for by her son’s estate.

The mother feels utterly helpless. Her movements are not restricted but she has forcefully been stripped of her rights to companionship, her compassion, and her duty of care, for her son.

She has developed serious mental and physical health problems because of the way “the system” is dealing with her, her family and her son.

I don’t know anybody who wouldn’t agree that this is deeply upsetting and completely wrong. That it is cruel and should not be allowed to happen in one of the richtest and most developed nations of the world.

This mother’s story is well known to the HSE, officials and politicians.

Nobody has done anything to change this family’s situation.

The mother says that she will not rest until her son gets out of his current placement and is allowed to move close to home.

She is prepared to break out of her virtual jail imposed on her family by a well-oiled machine.

She says that she will never abandon her son, as has been suggested to her by well-meaning healthcare professionals on numerous occasions.

Even if breaking out of her virtual prison means going to the real jail should the ‘system’ retaliate, as she keeps telling her family’s story.

Can we and will we help this mother to pull that door and get herself, her son, and her family out of that virtual prison? Pulling that door, rather than pushing it, as everybody expects her and us to do?

Anybody?

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A job for a Jail Breaker

If you or someone you know is looking for a truly exceptional job opportunity, check out the job advert of the An Saol Foundation who are looking for a Programme Manager.

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Kalimba

Last week, Pádraig had another visit by a PhD student from UCD who is working hard to discover ways for Pádraig to play music and access different types of devices.

This time, he had prepared a Kalimba and a haptic/touch-type ‘keyboard’ to access and discover different kinds of sounds.

It was beautiful and truly amazing to see and feel the interest, energy and enthusiasm in the room. It was like a journey of sound discovery. Beautiful.

Pádraig liked it 5/5 and can’t wait for the next session.

Away from limitations and out into the wide open of sound discovery and the total enjoyment of new experiences. Here was someone pulling, instead of pushing the doors.

A classic jail break.

You’ll learn, as you get older, that rules are made to be broken. Be bold enough to live life on your terms, and never, ever apologize for it. Go against the grain, refuse to conform, take the road less traveled instead of the well-beaten path. Laugh in the face of adversity, and leap before you look. Dance as though EVERYBODY is watching. March to the beat of your own drummer. And stubbornly refuse to fit in.

Mandy Hale, The Single Woman: Life, Love, and a Dash of Sass

It must have been a great night out, judging by the picture. It mightn’t look like it but this night was all about life on your terms, about leaving the well-beaten path, about marching to your own drum, and refusing to fit in.

When Pádraig’s Dublin homecoming was discussed, there were cautions about ambulances being called if necessary, about potential seizures, and about the health system taking decisions in Pádraig’s “best interest”.

Here he is, on his own with his friends/carers, inviting them to a meal, and enjoying great food himself. Friendship, banter, fun, jokes, and happiness.

The night out and the picture have meaning beyond description. Without going much beneath the surface, this is semi-independent Pádraig in a place and a situation he was not supposed to be in anymore. Ever. Refusing to conform. Dancing as though everybody is watching.

He also went out with friends to see The Banshees of Inisherin, made by the same people who made what is one of his favourite movies, In Bruges.

I haven’t seen it yet, but have been told that it is quite sad. Also very beautiful.

One quote from the movie I like is by Dominic Kearney (to Pádraic): Maybe this whole thing is just been about getting you to stand up for yourself.

Because some times things are about something completely different than they seem to be. And I like the idea of standing up for myself.

I got the bag, I got the number, and a friend sent me a picture from eight years ago when we had a well-earned pint after the run.

For the first time in three years, the Dublin marathon will be on again today. Tommy, the father of one of the An Saol families, is running it fundraising for An Saol. I had planned and prepared to do so as well, but – unfortunately – have had a cold for the past few weeks and just don’t feel well enough to give it a go today. I have no voice, a runny nose, and a splitting headache. Not a good condition to start from. I had been looking forward and preparing for the day for some time. It’s a big disappointment.

But – to compensate, I signed up for the Hamburg Marathon in April 2023. Fingers crossed. I’ll leap before I look. Laughing in the face of adversity. Dance.

Good luck to all the great people who will be running today. Especially Tommy. I’ll be with you in spirit.