And I’ll stand on the ocean until I start sinking.
Bob Dylan, A Hard Rain’s A-Gonna Fall

What better place to stand than on the Ocean?

A few people have tried and succeeded. Some did it on their own. Some needed a bit of encouragement. Some required a bit of help. All needed determination and faith.

Believe in themselves. They could do it.

You need to know your song well before you start singing and before the hard rain’s a-gonna fall.

Then you can do anything.

Pádraig is doing this every day. Last week he did it with the help of some great people. And also on his own. Standing. Using his voice.

He is also doing his bit for me. He chipped in with his sisters – they all gave me a surprise present to go to a beautiful place in Waterford. Right beside the sea. For two nights of heaven, some of the time literally in the clouds.

Across the see, on the other side of the bay, I could see this house with golden windows which made me think of the story by Laura Richards. If you don’t know it, it’s well worth reading. There are many different takes on it, but at its core, I think, is the idea of perspective.

It’s similar to Ovid’s verse from his Art of Love: The harvest is always more fruitful in another man’s fields (Fertilior seges est alenis semper in agris) or, in more modern language: the grass is always greener on the other side of the fence.

The secret, and the lesson of the house with the golden windows, it is us who live in the house with the golden windows. Just that sometimes, we don’t quite see it that way.

But the truth is: we can live the most wonderful live as long as we have faith in ourselves. As long as we won’t get scared by the sound of a thunder that roars without a warnin’ or the roar of a wave that could drown the whole world. As long as we listen to the ten thousand whisperin’ and care about that one person starving.

We can do what others might think is impossible as long as we believe in ourselves. One day, A Hard Rain’s A-Gonna Fall. But until then, we’ll enjoy our lives to the fullest, and the company of our friends and family.

I’ve stumbled on the side of twelve misty mountains, I’ve walked and I’ve crawled on six crooked highways, I’ve stepped in the middle of seven sad forests, I’ve been out in front of a dozen dead oceans. And I’ll stand on the ocean until I start sinking.

When you have expectations, you are setting yourself up for disappointment.
Ryan Reynolds

Do you want to hear the good news or the bad news first?

I’ll start with the good news.

A group of Ireland’s leading experts in building design and development have agreed to make a collective philanthropic effort to design and plan Teach An Saol. Absolutely incredible and unbelievable. But the results will speak for themselves. Hopefully sooner rather than later

The bad news are not really bad news, just a confirmation of what we know already and what I have been told, again, last week by several people who are in the know: the HSE is beyond fixing.

When Senator Tom Clonan told fellow panel members on Virgin Media TV last week that when he asked the HSE for an additional three hours of home care for his disabled son, their only reaction was a review of his son’s medical card, nobody even blinked.

What about the recent, extremely thorough and costly HSE report prepared by independent international experts that stated that a service for those with a sABI is necessary, that An Saol delivers it, and that the service should be expanded because it will position Ireland as a leading shining light internationally. A service for which the Minister for Disability emphatically pledged her support?

Why is it that this inexplicable surprise statement affected me so much? Why am I not able to ignore what to me is a senseless and heartless remark?

When we are surrounded by really good friends who are going out of their way to support us?

When it is clear, that neither “World Peace” nor a functional Health Service Executive can ever be achieved – but, very likely, a purpose build campus for those with a severe acquired brain injury can.

Why can I not exclusively and only focus on the good things – rather than getting distracted by the unfixable?

I am 65 today. My birthday wish is to keep my mouth above the water line for another few years, to find enough strength to make Teach An Saol a reality, doing the obvious, creating the conditions for Pádraig and others to live their lives as they deserve to live it. With a little help from my friends.

Doing the job for a dysfunctional health system that is still wondering whether it is or it isn’t its obligation not even to do it but to support it! The whole thing is so absurd and funny that I’ll have, no doubt, a very Happy Birthday!

You don’t need a weatherman to know which way the wind blows
Subterranean Homesick Blues, Bob Dylan

Jack Kerouac wrote The Subterraneans in 1958 about his short relationship with Alene Lee in Greenwich Village, following his success with On the Road. Some say the novella inspired Dylan to write Subterranean Homesick Blues in 1965 which, in turn, inspired the Weathermen who, in 1969, became first active on the University of Michigan Campus as Weather Underground.

Something you always wondered about: how on earth are all of these things connected?

I only found out yesterday afternoon, and by pure chance .

It’s like Strawberry Fields Forever or Wagon Wheel (also written by Bob) – you can try forever to understand the meaning of the words, and probably fail. Or you can try to capture, feel the sentiment. That’s what connects the book with the song and the organisation.

They all are about attitude, a culture, and the expressions of a generation.

Yesterday, we went out to Djouce in Wicklow for one of those fabulous mountain walks we had been on years ago.

Somehow and unfortunately, things had changed.

I must admit, there was a moment when I thought how I was going to dismantle those barriers that prevented Pádraig and us to access the trails.

We tried three different parking lots, each with different access gates, each impossible to get through with a wheelchair, never mind with Pádraig’s one.

When you want to do something and it doesn’t work out it’s sometimes better to try a different way, rather than keep banging your head against that wall.

We went to Powerscourt Waterfall instead, just a few kilometres away.

It was fabulously beautiful.

The walk in the fresh air cleared our heads, mine included.

I’m with Dylan.

I don’t need a weatherman to know which way the wind blows. – Pádraig has been doing that every day for the past 10+ years.

I’m also with Kerouac:

The only people for me are the mad ones: the ones who are mad to live, mad to talk, mad to be saved, desirous of everything at the same time, the ones who… burn, burn, burn like fabulous yellow Roman candles.

If we want to live, we cannot waste the little time we have struggling with idiots who put up gates that let some people in but lock us out. With idiots who’ll never get which way the wind blows. With or without a weatherman.

We will find another way to do what we want to do: live, talk, save, desire – everything at the same time.

Burn, burn, burn.

Live, live, live.

‘Would you tell me, please, which way I ought to go from here?’
‘That depends a good deal on where you want to get to,’ said the Cat.
‘I don’t much care where -‘ said Alice.
‘Then it doesn’t matter which way you go,’ said the Cat.
‘- so long as I get SOMEWHERE,’ Alice added as an explanation.
‘Oh, you’re sure to do that,’ said the Cat, ‘if you only walk long enough.”
Lewis Carroll, Alice in Wonderland

If you don’t know where you are going, any road will do. You just have to keep going. You will get somewhere.

There is a lot of uncertainty here. Nearly too much for my German mind.

We need a goal, know what we are aiming for – right?

What about getting that dream job? Buying a gorgeous house? Getting married to the love of your life? Having beautiful children? That’s the way we ought to go, right?

Last week, Pádraig went to see Foil Arms and Hog in Vicar Street with a friend. Live performances are so much better than recordings – which means a lot in the case of these three lads.

The same friend and Maria went out to see the “Friends Experience” the next day, the set of the famous and long-running Manhattan-based comedy show.

Could it get any better?

Another friend of Pádraig’s came to visit during the week. He had been with Pádraig the day of the accident in Cape Cod Hospital, the first to arrive there. He was asked twice by nurses whether he was going to consent to donating Pádraig’s organs. The clinicians would have told us, no doubt, that this had been an emergency situation. That they had not been able to contact us and thus had asked the person closest to Pádraig who was present.

He didn’t consent and Pádraig is not only alive. He has inspired the An Saol Foundation and transformed, possibly saved, the lives of many people. He is running the place and nothing would happen without him pushing it along, with some assistance.

We listen to RTÉ’s Playback programme on Saturday mornings and usually turn off when Richard Curran’s The Business begins. Yesterday was different as he was talking to Jack Kavanagh. Jack, who suffered a spinal cord injury about 11 years ago, very eloquently described what he made out of his new life that suddenly had confined him to a wheelchair. Jack keeps fit and works, I think mostly on his podcast, social media accounts, and as a motivational speaker. I heard him saying many things Pádraig would say if he had a voice. Things that we say for him.

It’s the free spirit and the true heroes who don’t go the way they ought or wished to go but keep going anyway, perhaps even Into the Wild, and engage with and make the best out of whatever they meet on their way. Not just for themselves, but for others too.

They know that they’ll be getting SOMEWHERE as long as they keep going.

And never give up.

Dead men don’t bite.
Israel Hands in Treasure Island by Robert Louis Stevenson

Treasure Island is, of course, the story of twelve-year-old Jim Hawkins by Robert Stevenson, who finds a treasure map that belonged to the pirate Captain Flint. Jim and his friends travel to a faraway island and meet ex-crew members of Captain Flint, who were also looking for the treasure and take Jim as a hostage.

They face shipwreck, a pirate mutiny, and sword fights. But, eventually, they overcome all the odds.

It’s a story about courage and prudence.

Last Sunday, Pádraig went to see the Treasure Island panto in the Helix theatre in DCU, together with a 40 person strong Caring and Sharing Association, CASA, group and the tickets having been made available by an anonymous donor.

Few things are more Irish than Pantomimes, pantos. They are a great family event each year around Christmas with entertainment particularly for the kids, but with jokes only adults appreciate being thrown in deliberately to keep everybody engaged. They encourage interaction and engagement. You sing along, shout back and maybe even stand up and dance. Oh, yes you do! And you always have to watch the characters’ back: “Look behind you!”.

We enjoyed it tremendously. It was great fun and brought many smiles to everybody’s face. Friends who had not seen Pádraig with his glasses before did not believe how much better he seemed to be.

The day itself felt a bit like an adventure. Getting out to a lovely theatre on a freezing cold day. The great company. The spectacular performance.

One of my favourite pirate quotes from the book is:

I’ve sailed the seas and seen good and bad, better and worse, fair weather and foul, provisions running out, knives going, and what not. Well, now I tell you, I never seen good come o’ goodness yet. Him as strikes first is my fancy; dead men don’t bite; them’s my views—amen, so be it.

That’s what pirates do. They look after themselves. They strike first. Dead men don’t bit. Amen.

In a world where it sometimes feels as if we were surrounded by pirates, this is good to know for survival. To avoid their strikes. To stay alive. With courage and prudence. And a bit of a bite.

Goodness will come out of goodness. Just not in a pirates’ world. That takes the Dreamboaters.

Built a boat yesterday
In one early morning half dream
Tú féin ag cabhrú liom
Craobhacha a bhaint de chrann
Ghreamamar le chéile iad
Le drúcht ó na ribí féir
Is báidín gleoite í
Lán de dhóchas ó mo chroí

And it floated like a dream
On those waves just you and me
Is it a sign of things to come
Lets just sail and have some fun

Check out the Dreamboaters’ live performance at a concert for Pádraig in the Grand Social, Dublin, in December 2014.

Life is short, break the Rules. Forgive quickly, kiss slowly. Love truly. Laugh uncontrollably and never regret ANYTHING that makes you smile.
Mark Twain

Paul (or was it Timothy?) in his letter to the Collossians gave this advice: Be even-tempered, content with second place, quick to forgive an offence. Forgive as quickly and completely as the Master forgave you. And regardless of what else you put on, wear love (COL 3.13).

While Paul didn’t refer anywhere to “kissing slowly” or, indeed, kissing at all, the essence of his remarks are not a million miles away from Mark Twain’s counsel.

Both want to encourage us to focus on what it is that makes life truly worth living. Being annoyed, angered, or bitter makes a miserable life. Focusing on what is good in life and in others, however, can be hard, especially, when you have plenty of reasons for being, let’s call it, “distracted”.

That’s why, sometimes, we need people around us who help us to (re-)focus.

Last week, Pádraig was lucky enough to meet some.

First, he went back into the “Gaming Room” and had another go at “Forza”, racing cars through the imaginary Sonora Desert in Mexico, using the ByoWave adaptable controlled, supported by a couple of young gamers.

Later in the week, he got a new pair of Ptosis glasses.

It is hard to over-estimate what a huge difference these glasses must be making for Pádraig’s life. It is not quite like being given back his eyesight, because he always could, although only with a big effort, open his eyes, but it is probably pretty close to it. The amazing thing is that even with these glasses, he can blink – and should they after a while become annoying, he is well able to take them off.

The day he got them, we decided to have a nice lunch, as we were in town anyway.

These glasses do not only help Pádraig to see better what is going on around him, they also help the people he meets to realise that he is not asleep but fully participating in life.

Let’s wear love. Forgive quickly. Laugh.

Life is short.

The secret of change is to focus all your energy, not on fighting the old but on building the new.
Dan Millman

Someone attached to a rubber band jumping off a platform high up in the sky is either stone mad or has a lot of faith.

Whatever the case may be, nobody will stop them from jumping.

Once there was a care provider manager pushing Pádraig’s wheelchair along the footpath in front of our house to assess the risks – not for Pádraig, but for his carers. We breathed a big sigh of relief when she approved the risk. She could have stopped Pádraig from going out with his carers had she deemed the risks to be too high.

When you have a disability, everything seems to become a risk. Even going out to get a breath of fresh air. I had to think of the hospital consultant who would not allow Pádraig go out because “We don’t want any dead people in our yard.”

Is this a case of the German Psychiatrist Consultant Manfred Lütz‘s thesis that We’re treating the wrong people: Our problem are the normal (Wir behandeln die Falschen: Unser Problem sind die Normalen)?

Speaking of ‘treatments’.

Over Christmas, I had a long phone call and various email exchanges with a U.K.-based highly experienced therapist who invented Facial Oral Tract Therapy (F.O.T.T.) and many other approaches to dealing with the effects of acquired brain injuries. When I mentioned to her that we wanted to work on Pádraig’s voice production, she asked me a dozen questions which I was not able to answer, except one.

No, we had not tried to encourage Pádraig to produce voice when he was lying on his stomach. But why not, she asked?. Lying on your tommy is the easiest position to produce sound, she said.

In ten years since Pádraig’s accident, no-one ever had told us.

We tried it out. It worked wonders.

Similar to his Ptosis. Very well known and understood condition following brain injury, she said. Really, I asked? Just one German neurologist had ever mentioned that to us in the past years.

She sent me a few papers and links. Here is a selection of what she shared with me.

• Eye movement problems following stroke and brain injury by the British and Irish Orthoptic Society.
• Ptosis Props
• Various tapes

There is so much knowledge, expertise and advise available that would make so many people’s live so much easier.

We just have to make it available in Ireland. Focus all our energy on building the new.

We went into town with Pádraig over Christmas and had a great time. Among many other really funny and entertaining things we came across was this man in a balaclava standing in front of a Garda car on Henry Street advertising a traditional Sunday beef roast and the best pint in Dublin.

He was definitely taking a risk. So were the Gardai.

I was wondering whether this was real or whether my mind was playing games.

Standing in the way of a Garda car in a balaclava advertising pints of Guinness on one of the busiest pedestrian streets of our capital city?

Stone mad. Definitely. And so very real.

Today is the ninth anniversary of the day that a young courageous doctor pulled out Pádraig’s tracheostomy, put a plaster on the opening, wondering why nobody had tried this before — and then organised a room for Pádraig in her hospital rather than sending us back to where we had come from, apologising that it was only a single room. But, she said, she had organised a mattress for me to sleep on the floor and a reclining chair for his mother so that we could both stay with him, if that was ok. Meals, she said, again apologising, unfortunately could only be served for Pádraig and one other person. Over the next two weeks, I organised the move from a small apartment to a bigger top floor apartment in a brand new coop building. Luckily, one of Pádraig’s friends was over to visit. He helped me to move all of our belongings loading a rented truck up to the roof. Two weeks later, after 19 months, Pádraig was discharged from hospital. Against the repeated, strongest advice and the extremely negative and frightening prognosis by his doctors in the hospital he had spent nearly 19 months in, he never aspirated, never had a lung infection or pneumonia, and he not only survived, but is enjoying with us and his friends the same food and the same drinks – which he immensely enjoys.

Stone mad. Definitely. And so very real.

I don’t know if my hairstyles reflect that, but I am someone who enjoys change.
Cobi Jones

Let’s forget about all those New Year resolutions we all had not just once, but nearly every year. Yes, there were slight variations, but, in essence, they were the same year after year. We knew what we wanted and needed to do and then swiftly forgot about it as the busy days took over again from the more reflective times between the years.

You know what I am talking about.

Like the little girl in the picture above, I am excited. Like Cobi Jones, I like change, even if my hairstyle doesn’t reflect it.

Following years of really hard efforts, we now have total agreement with all relevant parties, that those with a severe Acquired Brain Injury can no longer be left behind, locked away and be forgotten about. Not from a clinical point of view and not from a human rights point of view.

Amazingly, not only do we have total agreement on the need to do something, but total agreement on what it is that needs to be done, by whom it should be done, and who should pay for it.

And all has been summarised, written up, and recommended not by me, not by the An Saol Foundation, but by the Irish Health Service Executive, HSE, itself – all brought together in the Teach An Saol project which will kick off next year.

The stars are aligning and I feel the wind blowing from the right direction. The Universe just needs a little bit of determined encouragement, direction, and focus, to make Teach An Saol a reality: Sustainable enhanced services; a purpose-built campus with Social, Activity, Respite, and Transitional Living Hubs; and Satellite Centres across the Country.

We will create that focus on the back of a campaign that will put the rights of those left behind, mis-diagnosed as lost ‘cases’, and subsequently written off, at the Centre of Attention.

Live of those with sABI will change.

---

Pádraig has been busy over the last week.

He became Godfather of his first nephew. There was a really nice baptism ceremony in the church, followed by a family get-together with some of the best pizza, totally home-made, I’ve had in a very long time. I didn’t think about it at the time, but Godfather and Pizza go well together as themes.

The baptism made Stephen’s Day even more special. It was a fabulous day and made us all so happy.

Over the Christmas Days, one of Pádraig’s best friends sent him a Sunday Playlist with some new Irish music. We listened to it while doing our Sunday Morning Workout. It must have been a bit of a relief for Pádraig not having to listen to my auld playlist of which he must by now be sick and tired. And such a great way to hear what is current, what it is that people are listening to, and to move with the times. At the end, even one of Pádraig’s carers (who is not from Ireland) asked whether I would share the list with her so she could learn more about modern Irish music.

The same friend also shared a picture of one of the huge billboard advertisements around the country featuring Pádraig promoting the Decision Support Service (DSS) and the new (!) 2015 (sic!) Assisted Decision Making (Capacity) Act.

So, in case you’re looking for a change too, here are a few new things you could do in 2024:

• Help us to promote the Teach An Saol project (2024-2027). How? Tell everybody about it (easy) or help us in very practical ways (a bit more involved), for example by helping us to run a social media campaign, by making appointments with politicians, or by putting us in touch with journalists. Or by whatever other stuff makes sense to you.
• Spend time with Pádraig who is always looking for good company. You could visit, go out with him, tell him about your life (that could be a one-to-one:), or fill him in on new music, films, books, or podcasts.

Pádraig himself told us yesterday, that what he most misses since his accident is his voice. We promised him to do what we can to help him recover his voice as much as possible.

I hope you had a good Christmas and time to look at life from a distance which might have offered you a different perspective on what is really important in your life. Make the change. Not the same old but something really new and exciting.

Thank you to you all who have supported and helped Pádraig in his new life over the past year in so many different ways. He, and us, would not be where we are would it not be for you. I cannot thank you enough. It is truly uplifting to see and experience so much goodness in a world that is struggling so hard.

I wish you all a very Happy 2024 and may all your wishes become true.

I can see a better time when all our dreams come true.
Shane McGowan (1957-2023)

That couple in New York, despite being pretty down and out, could see a better time when all their dreams would come true.

Seriously? Or had they realised this was nothing more than a fairytale?

Christmas is a time when many people get slightly depressed, sad, melancholic, heavy-hearted.

In preparation for my talk to the German, Austrian, and Swiss societies for Neuro-Rehabilitation the week before last, I went back over pictures documenting the total neglect of the health system of people whose diagnosis is an “intolerable life”, people who cannot be “cured”, where any further interventions would just be “wasted”, people who can “justifiably” be neglected, even if this neglect leads repeatedly to life-threatening situations.

Following a suggestion that instead of leading an intolerable life his organs could make many people happy, the health systems made his life nearly intolerable. A destroyed urinary tract, a life-threatening thrombosis, hair unwashed for months, a “spontaneous” haematoma, a life-threatening collapsed lung following prolonged use of a ventilator, a series of infections including MRSA with subsequent year-long isolation, a dislocated extremely painful femur/hip, blisters and pressure sores making the removal of part of his heel necessary —- all these could have been avoided; they happened because of neglect. Neglect that did never seem to surprise anybody because it is the norm in health systems when they deal with “hopeless cases”.

While we were horrified, the health system and those working in it were only too familiar with those horrific, avoidable, secondary injuries. Nothing unusual. Daily routine.

None of the professionals at my talk were surprised by these pictures showing terrible, life-threatening, but totally avoidable injuries.

They were more surprise when I shared pictures of Pádraig’s life today. His happiness. His abilities. Him taking control. Participating and being integrated. I shared pictures that you are so familiar with if you have been following this blog for a while.

Like these from his recent Christmas party to which he had invited his friends, assisted by one of his best friends who keeps everybody in the picture and who each Christmas time does his magic using a secret recipe for a magic drink, which he calls Mulled Wine.

Or, also last week, at the Hosier concert accompanied by one of his best new friends.

There were a few Firsts last week too, like the attempt to pay Jingle Bells.

Or showing us how well he can use his right hand, often ignored by us because we don’t realise how well he can use it. He took a Grasp Switch in his hand and pressed it each time he heard a signal triggered at random. With these reaction time I’d feel safe with Pádraig driving my car.

None of the horrendous secondary injuries inflicted on him during his time in hospitals, the unbelievable comments from health workers suggesting that it might have been better had he died — all that is long behind us.

Without any medication and without being in the care of the health system, Pádraig is enjoying life and taking control of it. None of the horrendous injuries ever re-occured — because they can easily be avoided if you care.

We can see a better time and it’s not a Fairytale.

So, Happy Christmas. I’ve got a feeling next year is for me and you.

The battle outside ragin’ will soon shake your windows and rattle your walls for the times they are a-changin’.
Bob Dylan

Pádraig was really happy yesterday to see Christiane on a video WhatsApp call from Augsburg where I, with Pádraig as a virtual co-presenter, was to present to the annual meeting of the neurorehabilitation societies of Germany, Austria, and Switzerland, attended by 900 practitioners and researchers.

They had invited us to share with them the story of the An Saol Foundation. Although Pádraig couldn’t come in person, he was present there more than anybody else.

To my surprise, the room was packed, with people standing at the back and sitting on the floor. Many talked to me afterwards and wanted to find out more.

Looks like the example is making waves.

With the Congress, there was an industry exhibition where I made a few good connections and discovered a few new, interesting pieces of equipment of great potential for An Saol.

There was a young man looking in from the outside to one of the talks. He attracted more interest than most of the speakers. And there was the famous portrait of “Che” by Irishman Jim Fitzpatrick – at a stand at a small Christmas market we visited on one of the evenings.

I attended dozens of talks. It was clear that we all know what needs to be done. But it was also confirmed that few of us are doing what needs to be done. Few who are prepared to rattle the cage and rock the boat.

There was another thing I learnt: there are two famous John Krakauers in the world. One is the author of “Into the Wild” and other books. The other is equally brilliant, not as a writer, but as a neurologist, not afraid of pushing the boundaries and provoke. The world needs more of people like him.

Because too many people see barriers and restrictions wherever they look. Luckily, there are sufficient straight thinking revolutionaries, like the man on the banner at the Christmas Market, who have realised that radical change is necessary and who are prepared to bring about that change.

While preparing our contribution to the congress, I tried to remember how many people had helped us along the way. Their number was surprisingly high. High enough to be heard, seen, and felt. Not at some distant day in the future but now.

They are ready to do what they can to support us. Change is coming.

It’s time to wake up and smell the coffee.

Because the times they are a-changin’.