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?

---

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.

---

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.

A Sense of Humour is just Common Sense Dancing.

William James

Pádraig met a few old friends at an Irish language event organised by DCU library in St. Patrick’s College, the opening night of an exhibition celebrating  the 100^th anniversary of the birth of Cathal Ó Sandair, the most popular Irish-language writer ever. Róisín Adams was in conversation with Caoimhe Nic Lochlainn, Fiontar Scoil na Gaeilge, with Sadhbh Devlin, also Fiontar Scoil na Gaeilge, being the MC for the evening. It was another relatively small, but intimate and extremely friendly gathering where Pádraig really felt at home.

During the week, we had a few tough days, with a bad cold hitting us, except Pádraig. An Saol had a visit from the Irish Minister of Disability who had been invited by one of An Saol’s clients to come and see the place.

Anne Rabbitte was very impressed and extremely supportive of the Centre and the work of the An Saol Foundation. For her it was clear that the Centre’s work had to continue – and in its own permanent home.

Listening to what sounded like very common sense reminded me of where we have come from. Nearly 30 people are now attending the An Saol Centre and eight families are part of the An Saol Project that had been established for three to five families less than three years ago. We found and adapted a building, employed staff and are now delivering a service for people who up to then had been completely abandoned. We are delivering what expert government reports had been calling for for more than a decade. In the An Saol Centre, people again found hope that had been taken away from them.

Yes, of course, we can do even better. We need to improve on what we are doing, and we have to do more: create a better social space and add respite and living quarters for those who need them. (By the way – if you know someone who could part with a field in North Dublin for An Saol, please let me know.) And we can do with more help from like-minded people, from volunteer-drivers to collect clients who don’t have their own transport, to someone with a few hours a day to help us keep the place clean and tidy, to a Programme Coordinator to organise an efficient and effective service. A good send of humour is required for all positions.

Interested?

All the other stuff I hear from those who really haven’t smelled the coffee yet is just noise that I will take with a sense of humour. It will keep my common sense on the dance floor.

Use the time you have wisely. Also, be grateful for your life because that too will not last forever.

12 year-old Hamish O’Flaherty at his father’s funeral last week in Creeslough

You will all have heard about the terrible explosion in Creeslough, Co. Donegal, that killed ten people on Friday of last week.

This week, their funerals took place. A short speech made at the funeral of James O’Flaherty by his 12 year-old son Hamish, was probably one of the most moving. He said about his father that he had no shame: he wore a jacket with a huge paint stain on the side of it everywhere, in the shops, to the movies, or on the beach.

Having thanked everybody involved in the rescue efforts, he said that he liked to say something he had learnt in the past week or so.

We should be grateful. For your families, cherish them, be grateful for they won’t be there forever.

Use the time you have wisely. Also, be grateful for your life because that too will not last forever.

Be grateful, for you will be able to rest after your hard work. 

You can see and listen to Hamish’ short speech here.

Yesterday was Harp Day, of Lá na Cruite. There were all sorts of Harp concerts going on. The best one must have been the free lunchtime event in the Casino at Marino, just a short distance away from us.

The Casino is one of the finest examples of 18th century Neo-classical architecture in Europe and was only recently re-opened to the public. For us, it was the first visit. And it was spectacular. Three excellent harpers, Ann Tuite, Mary Kelly and Leah O’Sullivan, entertained just over a dozen guests for an hour in one of the fine rooms of the Casino (=small house, from the Italian casa), the Blue Saloon. You can listen to an amateur recording of some of the pieces here.

There was this small issue of the 12 beautiful steps leading into the Casino. We managed that no problem with the help of other concert goers. Those were the days when I was afraid of pushing a wheelchair through narrow isles in a supermarket – never mind brining it up or down steps.

I was thinking: imagine, a 12 year-old boy who has just lost his father asking the mourners at his father’s funeral to be grateful.

If he can. So can we.

No matter how harshly we believe life has treated us.

Rainbows apologise for angry skies.

Sylvia A. Voirol

One morning last week started with the most beautiful rainbow I had ever seen on our road. It wasn’t a case of apologising for an angry sky – it was a case of wiping away any anger that might have been there.

From the sky, from our minds.

And the day turned out as it had started. Beautiful.

A music technology lecturer working on his PhD came in to try out some of his ideas with Pádraig. He used switches from a Logitech Adaptive Gaming Kit – which costs a fraction of what the ‘medical’ switches cost. And he had created sound interfaces using a Microsoft Xbox kit.

Pádraig played some music using the Xbox pads. He then played music using the knee switch, changing the sound with a foot switch.

I thought it was absolutely brilliant. Judging by the expression on Pádraig’s face, he felt the same. We took some videos; with some more time, I’ll put them together and share them.

Another brilliant thing happened last week.

We had a Zoom call with the people who are planning a public awareness campaign for the Decision Support Service who will be helping with the implementation of the new Assisted Decision Making (Capacity) Act 2015 (sic!).

They would like Pádraig to help them and take part in the campaign. Pádraig was delighted with that. He was even happier when he heard that he will get a contract for his work and a fee.

Imagine. And think back a few years when decisions about Pádraig were not only made without consulting him, but also without our consultation. Some of them against our repeatedly expressed wishes. By doctors and nurses who had his ‘best interest’ in mind without even thinking of consulting him.

How life has changed.

No more angry skies – but beautiful rainbows, full of lively colours.

Perhaps all the dragons in our lives are princesses who are only waiting to see us act, just once, with beauty and courage. Perhaps everything that frightens us is, in its deepest essence, something helpless that wants our love.

Rainer Maria Rilke

The first time I heard a ‘milestone’ mentioned was not when I was on the road but in an office. I was introduced to a big project that was divided into milestones that had to be achieved on a certain date. The critical path was not a path at all but an indicator of the minimum time needed to complete the project.

I have no idea how long our project will take or when it will finish, if ever.

But I know that a massive critical milestone was achieved in the last two weeks when Pádraig opened his own new bank account.

We are no longer waiting for change. It is happening and Pádraig is driving it. A true trailblazer.

There were times when a bank had problems even sending statements out to Pádraig. When we had to go with him into the branch to ask the cashier for it.

Worse, there were times when the system-recommended default for him was a nursing home. Because, we were told, he could potentially have really bad seizures and other terrible episodes, it would be incredibly hard for us to look after him at home, and it would be, instead, in all of our best interests to spend quality time together every other weekend on a visit. One expert clinician turned marriage counsellor told us that most marriages crumbled under such pressure.

None of the above happened. To the contrary. Pádraig never had a seizure nor any other serious illness since he moved home. He is enjoying life, tasty food, travel, and good company. We have never been stronger as a family.

It is amazing to see that the 2015 (sic!) Assisted Decision Making (Capacity) Act, soon, and finally, to be commenced, has already commenced in society — who is way, way ahead of politics and legal road blocks.

Times have changed. We just have to act with beauty and courage. The dragons really are princesses. They just need a little love and tenderness.

When the rain is blowing in your face and the whole world is on your case
I could offer you a warm embrace to make you feel my love

Bob Dylan, Make You Feel My Love

Pádraig had a good week, between getting back to the lunch time student concerts in St. Pat’s, some new active standing approaches, and a fitting of what looks like middle of the road blue jeans.

COVID stopped the concerts for more than two years and it was great for everybody to see a bit of what-used-to-be return. The students and lecturers in St. Pat’s were extremely helpful and accommodating, as ever.

Pádraig and the rest of us are getting a better hang of what is called ‘active standing’ – as if there was standing that wasn’t active. To be fair, what he is doing is standing with very limited support, especially if we get it right. No devices or artificial, man made, support involved. We try to include some exercises like swaying to the left and right, or bending and stretching the legs in turn as if walking. To be honest, to me it feels like one of the most rewarding activities. I can’t wait for the day when he (and us) will be ready to do some real walking across the room

I bought some clothes in RehaCare a week and a half ago that are made and sold by a small company in Berlin run by a very entrepreneurial wheelchair user. He couldn’t wear normal cut blue jeans comfortably and when he was trying to put a jacket on, it was always too long and in the way. So he designed and is now selling clothes that not only look fantastic but are nearly perfectly adapted to be worn by wheelchair users like himself. Today, Pádraig tried on some of the clothes I had bought and, luckily, I had picked the right sizes.

Yesterday morning, looking brilliant in the new trousers, we went into town and had a good Irish Breakfast in our ‘usual’, the upstairs restaurant in Dunnes Stores. You can pick what you want, it’s priced ok, and you can sit on a table with a bit of a view.

Sometimes, I get worried because these days life is nearly good, as good as it can be given what happened. There will be another crisis, outrageous situations, helplessness. But until then, I’ll join Pádraig enjoying every new day of our lives.

Dylan wrote and recorded 25 years ago this year what is one of the best love songs ever, covered by more than 450 artists. And for a change, he sings it. Nearly.

I’d go hungry, I’d go black and blue
I’d go crawling down the avenue
There’s nothing that I wouldn’t do
To make you feel my love

When we share our love with those around us, life is good.