We’re a very expensive group; we break a lot of rules. It’s unheard of to combine opera with a rock theme, my dear.

Freddie Mercury

By chance, I started to watch Bohemian Rhapsody last night, far too late. But I kept watching it until the end, more than two hours later. It’s the 2018, absolutely amazing biographical musical drama about the life of the Indian descendant, Zanzibar born Farrokh Bulsara who changed his name to Freddie Mercury and became one of the most iconic music performers ever.

I always wondered why my father’s eyes filled up with tears, especially in his later days, when he was watching the Pope on TV. Last night it was happening to me. Watching this movie about Freddie. For no obvious reason other than that I found some aspects of Freddie’s life deeply moving. Some of his views so outrageously true.

He was out of this world and he expressed that in the songs he performed with Queen. Is this the real life? Is this just fantasy? Under Pressure. Radio Ga Ga. Killer Queen. We are the champions. Anywhere the wind blows. We will rock you. Love of my life. A kind of magic.

The original version of the real Freddie’s incredible live performance at the 1985  Live Aid in London’s Wembley Stadium has more than 100 million views.

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The first week back in An Saol was brilliant for Pádraig. Two therapists had just come back from a short 1-2 week internship working with experienced neuro therapists in Burgau. It’s all still fresh in their minds and because some of An Saol’s other regulars were away on a break, they decided to practice some of the things they had learned with Pádraig.

They used Pádraig’s plaster of paris bespoke splints to stand him up against a wall and between two supporting therapy tables and blocks. Just like what is done in Burgau.

The therapists and trainers stood Pádraig up in the standing frame.

And we tried out an entirely new device, the Hasomed functional electrical stimulation (FES) device, controlling the famous MotoMed, stimulating Pádraig’s muscles and supporting as well as encouraging functional movements.

Everything has its price. The question is: is it worth it?

The straight, clear, unambiguous answer is: it depends.

Queen was definitely worth it.

So is Rehabilitation.

Spending relative modest amounts of money responsibly on training therapists, widening our horizons, accessing state-of-the-art equipment, pushing boundaries, – all in order to make life and living with a severe brain injury possible, to make our aspiration for true inclusion, participation and social justice a reality – is certainly worth any penny or cent we’re spending.

Have you every heard a rehabilitation centre echoing Freddie Mercury’s (slightly adaptive) statement:

We’re a very expensive group; we break a lot of rules. It’s unheard of to combine a severe brain injury with living a meaningful and happy life, my dear.

I haven’t. Ever. – Yet, these were the words of one of the world’s most famous, ground-breaking, mould-breaking, astoundingly successful artists.

Maybe it’s time to say it. To say it loud. And to say it proud. My Dear.

Don’t stop me know. I want to break free.

I guess now it’s time for me to give up I feel it’s time.

This is Saturday Night Fever on German TV. It’s mind boggling. Stunning. Beach Party on a beach wherever. With the Take That song Back For Good – in German. An extract from a programme that went on all night.

They were all so happy. What does it take to reach that state?

We went for long walks last week. The Arche Noah and their unique terrace where I worked as a teenager in a very different environment to that of today, the Promenade in St. Peter-Ording Bad all done up with expensive shops, and in Westerhever, where we discovered that while cars and walkers are facilitated to get up to the Deich, wheelchairs aren’t necessarily.

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Also did some work on the house and found a few real gems, from an antique tin of paint, an ancient hoover, to a shell full of cleaning agents, one being made up to clean grave stones, Grabsteine.

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This is the real McCoy. Summertime. Weird and wonderful.

Gotta leave it all behind now.

Donde termina el arco iris, en tu alma o en el horizonte?

Where does the rainbow end, in your soul or on the horizon?” 

― Pablo Neruda, The Book of Questions

When you look up the Chilean poet, diplomat, politician and nobel prize for literature winner Pablo Neruda you will find references to García Lorca, Miguel Hernández, and, of course, Allende. He was called a poet of the people and was, perhaps, Latin America’s most important 20th century poet.

I thought that I didn’t have an answer to his question.

Then I changed my mind.

Being away from a daily routine changes perspectives. Wide horizons open the heart. Shadows let you see yourself in a different light.

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It was all there at the Eidersperrwerk. Having had a drink and a bite to eat, we went up to the wall supporting the gigantic barriers regulating the flow of the river. As we looked at them, we saw our reflections, as we stood together.

There are pots of gold at the end of the rainbow. Somewhere beyond the horizon. You can chase them. Hoping for the best.

No need to chase the rainbow that ends in your heart. It’s right there with you. You just have to see it and feel it – which, admittedly, can be tricky when you are busy.

Another reason to take time out.

I’ve got two places I like to be. Portugal is one. And, of course, Barbados is the other place where I like to be.

Cliff Richard

We’re neither in Portugal nor Barbados. Both are beautiful. But not as beautiful as the North Coast. No more workin’ for a week or two.

We are where the sun shines brightly and where the sea is blue. We’ve seen it in the movies, now we see it’s true.

We’re doin’ things we always wanted to do. To make our dreams come true.

It’s a week or two and a dream come true.

We’re on our summer holidays.

And we won’t have a bother in the world.

Planet Earth is blue and there’s nothing I can do.

52 years ago this month, David Bowie became Major Tom. He took his protein pills, put his helmet on, checked the ignition and made the grade. The papers wanted to know whose shirts he wore. Eventually, it was time to leave the capsule (he dared). He stepped through the door and floated in a most peculiar way. The stars look very different that day. He was siting in a tin can, far above the world.

Two weeks ago, Sir Richard Branson flew towards space aboard the Virgin Galactic (NYSE:SPCE) Unity spacecraft, a critical test flight before commercial operations can begin.

About a week later, Jeff Bezos blasted to the edge of space aboard Blue Origin’s New Shepard space capsule, later thanking Amazon employees and customers, “because you guys paid for all of this“. (I couldn’t stop laughing when I heard he had been saying this.)

Nobody knows exactly how much Branson’s or Bezos’ space trip cost. Most likely dozens of millions. Most definitely more than Bowie’s trip. Even though I am nearly sure that neither Branson nor Bezos ever got as high as Bowie did half a century before them.

For most people, any journey will do these days. It doesn’t have to be space travel.

Just to have a change. See other people and places. Taste different food. Smell a different country side, maybe the sea. Feel the wind in their hair and the sun on their skin. Spend time with family, make new friends, create new memories.

For the next three weeks, we’ll take time off together and we will do exactly this.

Commencing countdown, engines on.

What’s the most transformative thing that you can do for your brain today? – Exercise.

Wendy Suzuki

Wendy is Professor of Neural Science and Psychology in the Center for Neural Science at New York University. In her TED talk she asks her audience:

“What if I told you there was something that you can do right now that would have an immediate, positive benefit for your brain including your mood and your focus? …  Would you do it? Yes!”

TED Talks are short. Try Wendy’s.

What she discovered, being a Professor and all, is, of course, not entirely new. Decimus Junius Juvenalis noted in about 100 A.D. in his Satires “Mens Sana In Corpore Sano”. A Japanese corporation picked the acronym of a slight variation of the same statement, Anima Sana In Corpore Sano, for their company name, ASICS.

“A healthy, or a sound, mind in a healthy body” captures in one sentence the knowledge that physical exercise is an essential part of mental and psychological well-being. And more.

Wendy’s research shows that exercise has an immediate effect on your well-being. She says that “a single workout (…) will immediately increase levels of neurotransmitters like dopamine, serotonin and noradrenaline. That is going to increase your mood, (…) improve your ability to shift and focus attention, and that focus improvement will last (…). Studies have shown that a single workout will improve your reaction times.”

She recommends to

Her research has shown that “you not only get better focus and attention, but the volume of the hippocampus increases as well. And finally, you not only get immediate effects of mood with exercise but those last for a long time. So you get long-lasting increases in those good mood neurotransmitters.”

She says that the most transformative effect that exercise will have is its protective effects on our brain. “Think about the brain like a muscle. The more you’re working out, the bigger and stronger your hippocampus and prefrontal cortex gets.”

Wendy says that you don’t have to become a triathlete to get these effects. She believes that you should get “three to four times a week exercise minimum 30 minutes an exercise session, and you want to get aerobic exercise in. That is, get your heart rate up.”

I’ll stop here.

I think about people who need this exercise but cannnot get it without help.

We are making a small start in An Saol offering those with severe injuries the possibility to exercise. Exercise that we know contributes to having a happier life and a healthier body.

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There are other possibilities to exercise. Some are all around us. We just need to keep our eyes open and grasp the opportunity when it arises. This morning, we went for a walk along the seafront and discovered several exercise gadgets set up there by Dublin Corporation for people in wheelchairs.

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Absolutely amazing and well done Dublin City Corporation!

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The other very important issue of concern is, of course, the ability to communicate.

In that respect, Pádraig took a big step forward. You know that he is now using a switch above his left knee to access a speech app. That’s a position that works really well. We continue to customise his communication programme to make it easier and better for him to use it, to get his motivation going. A really small change on the options to express his opinion, mood, and wishes, brought him great fun last week.

I am sure he had been waiting to be able to say this on some occasions for quite some time.

This weekend is the warmest of the summer so far. Yesterday, the highest temperature ever was measured in the North of Ireland. Many people will be on the beaches, walk in the mountains or having a barbecue in their back gardens. We had one really enjoyable afternoon and evening yesterday with friends and family.

We’ll keep exercising.

Life is good.

Everything that is possible demands to exist.

Gottfried Wilhelm von Leibnitz

Gottfried (1646–1716) was a German rationalist philosopher, mathematician, and logician who in 1703 published an article in French called Explication de l’Arithmétique Binaire. This short article is widely cited as having made known the binary concept of on or off; yes or no; 0 or 1. Gottfried later noted with fascination how his system corresponded to the much older Chinese I Ching which he had been made aware of through the French Jesuit Joachim Bouvet.

A German philosopher publishing in French later referring to an ancient Chinese source. All happening around the 1700s.

Later, of course, the binary system was picked up and developed to operate computers, including the ASCII system, and to design autopilots. Many more scientists are now credited with its development.

So Gottfried, although unknown to him, had not really invented the binary system but is now credited with its invention because his article made it widely known. A bit like Columbus not really discovering the Americas, but making them known to the Europeans.

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Pádraig communicates mainly with a switch, also with thumbs up or down, tongue left or right. Not necessarily, but mostly, binary. It’s yes or no. Binary. Closed questions.

It took me a long time to realise how complex that simple looking system is.

Imagine you are eating your dinner, with someone helping you along. At some stage, someone asks you, “Would you like an ice cream?“

This is a typical dinner situation with Pádraig. I help him with his dinner and, when the plate is empty, I ask him whether he would like an ice cream for desert.

Put yourself into Pádraig’s situation.

If he answers ‘yes’, that’ll most likely be the end of his dinner and he’ll get an ice cream. There is no chance for him to ask for more dinner; it’s finished because the plate I filled up is now empty. He might like something with his ice cream or no ice cream at all. But he might still be hungry and decide to go for the ice cream rather than not having anything else.

If he answers ‘no’, that’ll also probably be the end of his dinner, when he might still be hungry. But he is not given a chance to opt for more dinner or a different desert.

So the answer to that simple question might have little to do with him liking an ice cream for desert, but with all sorts of other consideration which I all eliminated by not asking the right questions in the right order and only leaving him the option of a binary response.

And this is a simple example.

Many people ask him ‘negative’ questions, such as “You wouldn’t like that, would you?” A ‘yes’ or ‘no’ answer could be interpreted either way.

You might remember that Pádraig said, when Trump went on the campaign trail, ‘yes’ that he liked him – and it took us a week to figure out that he liked him not because he would support his politics but for his entertainment value (which rapidly faded once he got elected).

One day, Pádraig said he did not want to go for a walk with me – which left me surprised because he always likes to go for walks. Until I figured out that he had heard that I wasn’t well at the time and he didn’t want to put more strain on me.

Pádraig can take decisions for himself. Of course. But it takes a lot to be able to understand him, interpret his decisions and to support him in his decision making process. It’s never as simple as ‘yes’ and ‘no’.

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It took us eight years to find out that the Central Remedial Clinic (CRC) in Dublin have a Night Positioning Clinic. Hard to understand that no one told us about this when positioning is one of the most important issues for someone who cannot move themselves.

It took a bit of time and effort. But last week, Pádraig had an appointment. For him, and us, it was amazing. The therapist was very experienced and really knew what they were doing.

We are now looking at a number or a combination of systems, among them from Symmetrisleep and the Snooze Night Positioning System.

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The main concern is that his hips are positioned correctly and that last year’s issue will not return.

What amazed me most here is that all these issues and how to remediate them are well know and understood, but nobody shared their knowledge with us or offered help when Pádraig desperately needed that help. For example, it seemed that the therapist in the CRC was well aware of the procedure (percutaneous mysio fasciotomy) that helped Pádraig so much last year.

Earlier on in the week, Pádraig also had another appointment with his wheelchair clinic. The agreement now is that Pádraig is exceptionally tall and will need a wheelchair built for an exceptionally tall person. As this is not available ‘off the rail’, it will have to be built for him.

An obvious conclusion, really, just that it took a long time to reach.

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Something else did not take a long time at all. And it shows how much difference a bit of initiative can make.

There is this really beautiful walk in Leitrim around a lake. The problem was that at the end you had to cross a little bridge, but you had to get up a few steps. It was a matter of getting a few strong hands and lifting Pádraig up those steps onto the bridge. One message and less than a week solved the problem.

This happened in what Pádraig used to call ‘the middle of nowhere’. Five stars!

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This week’s lessons? Life is not binary. ‘Yes’ does not mean necessarily ‘yes’ and ‘no’ does not necessarily mean ‘no’. The best of care and the most attentive help might be available in the middle of nowhere where you might expect it the least.

Everything that is possible demands to exist.

Meditation is a must before you can really love. One should be capable of being alone, utterly alone, and yet tremendously blissful. Then you can love.

– Osho

Whatever I think about Osho, that sentence rings a bell for me. It’s not too far away from what Chris McCandless thought when he went Into the Wild.

Being on your own, meditating, maybe sitting on top of a mountain, might not be everybody’s place of choice. For some it is.

One of Pádraig’s friends has been spending his Mondays at the An Saol Centre sharing his art with us. The art of being. The art of yoga. The art of living. The art of coffee making.

On one of these Mondays, he reminded me that some of the happiest people sit on top of a mountain with their eyes closed.

There is no reason why Pádraig would not have found a place where he enjoys life in his way. Not living the busy, fast, at times very stressful, life. Not living the lonely life of the monk meditating on top of a mountain. But living his own life. With troubles, worries, uncertainties, restrictions. Happy moments, revelations, friendship and love. His own Independence Day.

Why had I never thought about it this way?

It is a curious perspective to look at his and our life. We cannot control what happens to us but we can choose how we react to it. This makes us who we are.

Pádraig was the chilled one. I was busy. In a way not much has changed.

Except that I will try harder to learn from his example.

And I won’t breathe the bracing air when I’m gone
And I can’t even worry ’bout my cares when I’m gone
Won’t be asked to do my share when I’m gone
So I guess I’ll have to do it while I’m here.

Phil Ochs

Today, 27 June, When I’m Gone is for Pádraig.

So I guess I’ll have to do it while I’m here.

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It was a great week.

So I guess I’ll have to do it while I’m here.

Pádraig’s wheelchair got a new fitting to position a switch above his knee. He tried out a Mollii suit. A Saebo glove. And got a brief intro into the sophisticated Fasia glove with tons of e-stimulation contacts and settings.

So I guess I’ll have to do it while I’m here.

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But that is not all.

A shipment arrived with two packets of the one and only Pete’s French Roast to replenish the dwindling and outdated supplies in Leitrim. Together with a really nice message on a fantastic card.

So I guess I’ll have to do it while I’m here.

And then tons of the most fabulous music. Including that song by Phil Ochs, When I’m Gone.

So I guess I’ll have to do it while I’m here.

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What is the condition of the person? – They are dead.

How much do you press? – Press harder.

For how long do you press? – Until the ambulance arrives.

These were some of the questions the instructor asked and then answered himself at yesterday’s life saving course all of us from An Saol attended. The course came free with the purchase of a defibrillator, an AED. It’s a smaller version of the two iron’s George Clooney in ER pressed on the chest of a patient, shouted “Clear“, hit that button, and the motionless body of the dead jumped into the air.

The little stories the instructor weaved into the course, taken from his experience of working as a first responder, were one of the most interesting aspects of the course, we all agreed.

He explained the symptoms of a heart attack and stroke. There were short videos showing what it would look like if one of these events occurred.

He told us that around 2,000 people a year suffered from a heart attack in Ireland at home or in the workplace. He then asked us, how many of those survived eventually. I proposed “2/3“? A colleague ventured “Maybe one quarter?” – “Less than 10%”, clarified the instructor.

At that, tears shot into my eyes. The one space not covered by my mask. The instructor looked at me and said: “You are very sad!? Unfortunately, that is the truth.” He repeated that a few times.

Would I tell him and my colleagues and friends in the room anecdotes of my life? Explain why I was so suddenly hit by sadness and grief?

That Pádraig’s life was saved by a nurse who jogged down Route 6 in Brewster eight years ago today. Then, miraculously, again exactly five years later when Pádraig went back to the accident spot. Who did not hesitate to run to Pádraig’s help and administer Cardiopulmonary resuscitation (CPR), pressing her hands deep into Pádraig’s chest to resucitate him after he had been hit by that van.

A 4.3 ton van, travelling at speed, had hit Pádraig from behind and knocked him off his bicycle. His head hit the windscreen and left a dent in the van’s ‘A-pillar’. When his body hit the road, he had lost consciousness and was not breathing.

He survived against all odds.

He is with us today against all odds.

I did not share that story.

Nor my own story about the night on the floor of my bedroom, unable to move. Of that life-threatening disease that had come and gone, hopefully, in our family.

Life has never been the same. But then, it never is.

It is challenging. For all. In different ways.

What matters is that we are alive. And together. Together with hundreds of Dreamboaters around the world. Celebrating life and living with a brilliant song full of energy, dreams and hope.

And that inspiring song by Phil Ochs.

And I won’t be laughing at the lies when I’m gone
And I can’t question how or when or why when I’m gone
Can’t live proud enough to die when I’m gone
So I guess I’ll have to do it while I’m here.

“Decision makers are human; they filter data through their beliefs, values, their agendas and ideologies.”

Carol H. Weiss (1927-2013)

I had never heard of Carol before. But I had come across the Theory of Change which she helped develop. And it was she who first used that name for the framework she and her colleagues had been working on.

Let us go to the other side.

“She argued that stakeholders of complex community initiatives typically are unclear about how the change process will unfold and therefore give little attention to the early and mid-term changes that need to happen in order for a longer term goal to be reached”, says a website promoting the theory.

The approach she and her colleagues chose in the second half of the 20th century has been developed further over the years and is now used by many philanthropic organisations, nonprofits, and the UN. There even is an online tool available to support the process of developing a theory of change for a particular community project.

We will not go down.

Can Change be achieved more readily if the process to achieve it is theorised?

I don’t know. The graphs and powerpoints look impressive. Google ‘theory of change’ and click on ‘images’ to get a taste.

Don’t you care if we drown?

Can decision makers be more readily convinced to support the change we want to achieve if they see that we understand how we will achieve this change?

I don’t know. I have the impression that many have little time and interest.

Why are you so afraid?

The past week was a good week overall. Pádraig had a garden visit from some friends, the first time in some time by them. A glimpse of what normality could look like.

He went to see a kinesiologist and ‘natural health practitioner’; a visit I found very interesting and a bit challenging/strange.

And he stood up in the standing frame again with the help of the great people at An Saol.

Great to watch videos standing up. Not quite like a concert but ok in these no-concert times.

The weather has been pretty good the past week. Changeable as it is but good overall.

Yesterday, there was another first: Pádraig broke the 5k on the MotoMed in the back garden.

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A friend of Pádraig’s has decided to come to An Saol once a week to try relaxation exercises, breathing, and meditation. We’re thinking of working with animals, outside in the green area. Because Life and Living is not all about ‘hard core’ clinical therapies but activities that make for a happier, more fulfilled life.

Who is this? Even the wind and the waves obey him!

The choices are, of course, not mutually exclusive. But if I had to choose between rehab therapy and Alaska, I’d go for Alaska. Fly over the Cuckoo’s Nest. Bring change to the life of the boys. The journey certainly would be fun. Whatever happens.

We will not go down.

I’ll have another look at that Theory of Change. And guidebooks to Alaska focussing on accessability.