In the beginner’s mind there are many possibilities, but in the expert’s there are few.

Shunryu Suzuki, Zen Mind, Beginner’s Mind: Informal Talks on Zen Meditation and Practice

There are different ways to express this concept. I only came across Shoshin and the Beginner’s Mind recently.

The mother of an An Saol Centre client mentioned to us today in the Centre that she had left a tissue with Pádraig for him to clean his mouth as she didn’t want to touch his face. Didn’t seem to be a big deal to her. Because, that’s what we do, right? When we want to clean our mouth we get a tissue or a serviette and clean it.

Only that this is not something Pádraig had done before, since his accident. For us it was a huge deal when we saw that Pádraig was well able to grab the tissue and wipe his mouth. We tried it again at home later and realised, again, that he was able to do so much more than we had expected.

We put a tissue on top of his left hand. He turned it, grabbed the tissue and wiped his mouth.

Before this, we hadn’t given him the opportunity to do this, because we didn’t think he could do anything with the tissue.

Many perceived limitations of a person are, in reality, imposed by others, by pre-conceptions, and (lack of) expectations.

It was raining last night. Summer in Dublin. Pádraig went out to see one of his favourite bands, Bell X1, in the Iveagh Gardens. Danny from the Coronas and his mother, Mary Black, were sitting next to him. During a break, Mary Black came over to say ‘hello’. I was a great, memorable night.

Pádraig met Paul Noon, Bell X1’s lead singer, in December of last year, when Paul joined us at the An Saol Foundation’s Advent Fest.

---

Preconceptions, knowing what is going to happen, coming up with a diagnosis and prognosis – these are all things taught to clinicians.

One reference I found relates to a maxim coined by Dr Theodore Woodward in the 1940s: When you hear hoofbeats, think of horses, not zebras.

This is still taught as a “useful” reminder that clinicians should diagnose the common causes rather than search, at exorbitant length (and cost), for low probability causes.

I heard this expression during the long months we spent in hospitals, and many more times since, when what seems to be the most obvious prognosis is made and set in stone. Which sometime can be like a death sentence for the patient.

There other views, even in the medical world: Louise Younie wrote about the Beginner’s Mind in The London Journal of Primary Care (PubMed Central):

The concept of ‘beginner’s mind’ invites the expert medical professional to be present to their patients, remaining curious and responsive in the face of the individuality of illness. Each patient is a universe of unknowns, presenting with suffering which cannot always be classified with a diagnosis. Improvisation and openness may not just benefit our patients enduring their patient journeys but may also revive and reconnect us with our own humanity.

Like any professional, as GPs we are at risk of presumption and habitual thinking. Beginner’s mind, that is recapturing the openness and curiosity modelled to us by children, can powerfully transform the medical encounter, allowing space for emergence of patient perspective and doctor response.

Perhaps not surprisingly, the zebra is the official symbol of rare diseases in the United States.

Like rare diseases, severe acquired brain injuries aren’t rare. But they are, like rare diseases, difficult to diagnose. A firm prognosis is nearly impossible.

“Listen to the patient” because they have lived in their body longer than you have known them, and “Check your ego at the door” because patients and parents quickly become experts in their condition, should become mantras for all clinicians.

They should practice Shoshin (初心), Beginner’s Mind, a concept from Zen Buddhism which refers to having an attitude of openness, eagerness, and lack of preconceptions when studying, even at an advanced level, just as a beginner would.

It acts as a counter to the hubris and closed-mindedness often associated with thinking of oneself as an expert. This includes the Einstellung effect, where a person becomes so accustomed to a certain way of doing things that they do not consider or acknowledge new ideas or approaches.

Remember that, amateurs built the Ark, professionals built the Titanic, and never be afraid of to try something new.

Be cogniscient of the Dunning-Kruger effect.

There are a million opportunities. Even when the expert only sees one. Trust me.

There was a reason these boys were still alive, though. Something made them stronger than the other kids, the ones who had died in the early days, who had simply lain down and given up, unable to cope with the terrible things that were happening in the world. These boys were survivors. The will to live was stronger than any other feelings.” 

Charlie Higson, The Enemy

Standing tall is one of Pádraig’s favourites. He says, it makes him feel alive.

For the past few weeks, those working with him have used a full gym-type exercise rack with some special attachments to help him standing up.

Being a head above everybody else is what he was used to. Standing in the rack, pulling himself up, standing tall once more, must be a phenomenal experience for him. Those helping to do this are truly exceptional. I cannot think of another place in the country where they would even think doing anything close to this.

Pádraig also had another session using the Handscupe+. More about that in a minute.

Last week, Pádraig had another visit from the UCD researcher who has been experimenting with the design of a device that would allow Pádraig to do “stuff” using the fingers of his left hand which he can control pretty well. This week it was about associating the movement of a particular finger with a spoken phrase such as ‘yes’, ‘no’, ‘maybe’, and ‘ask me a different question’.

It was not all about using the spoken word for communication. With Pádraig being a ‘trad fan’, the researcher thought that he would have fun playing the Uillean Pipes.

He did – and is looking forward to playing one day a few tunes with other trad fans.

Research has shown that you can think yourself to death. It’s a phenomenon called psychogenic death and has been observed specifically in persons affected by a deep trauma.

Dr John Leach, a senior research fellow at the University of Portsmouth and an expert on the topic, says that “severe trauma might trigger some people’s anterior cingulate circuit to malfunction. He believes that “motivation is essential for coping with life and if that fails, apathy is almost inevitable.”

All this means that if you really lost the will to live, you’ll die. It also means that if Pádraig had ever lost that will, he most certainly would not be with us anymore. The will to live requires love, meaning, and purpose.

There is no shortage of either of these in Pádraig’s life.

Researchers have also found that “death does not have to be inevitable even if you fall victim to “give-up-itis”. Different interventions like physical activity that can give the person some sense of regaining choice and control can break the terrible cycle by releasing dopamine.“

The Romans knew that anima sana in corpore sano. ASICS named their brand after this truth.

And the WHO has long been telling people about the crucial benefits of physical exercise.

It’s about getting physical while keeping the mind healthy. Then there won’t be any reason for “give-up-itis”.

Pádraig’s life is full of love, it is meaningful and full of purpose.

Because of that, his will to live is stronger than any other feelings. It enables him to cope with all the terrible things that happened to him and all the terrible things that are happening in the world around him.

On top of that: he inspires me and those around him.

No man’s knowledge here can go beyond his experience.

John Locke

We got where we are today because of the people who helped us along the way.

Newton wrote to Hooke, “If I have seen further it is by standing on the shoulders of Giants”. An Irish saying goes, “Ar scáth a chéile a mhaireann na daoine“.

Strangers who offered to settle hospital bills when it wasn’t clear whether his insurance would cover Cape Cod Hospital’s invoices. Who built Pádraig’s new room and bathroom. The Occupational Therapist who established communication using the bleeper. Those who fundraised over the years to allow him to have access to specialised therapies and equipment. They are countless: doctors, clinicians, family members, friends and complete strangers who have made and are making it possible for Pádraig to live his life with his severe brain injury. There is a long, long list of people who have helped him and us along the way.

There were also those whose advice would have led to Pádraig loosing out on his life – beginning with the consultant in Cape Cod Hospital suggesting that while Pádraig would have an intolerable life ahead of him, he could improve many others’ lives by donating his organs.

Pádraig was never going to eat or drink. If he did, he would probably going to aspirate, get an infection, and die. He needed medication to prevent seizures. If he didn’t take them, he could sustain further brain damage. He needed laxatives. Otherwise his digestive system wouldn’t work. He shouldn’t be helped to stand regularly. If he did, it could cause him serious harm. A standing frame we bought was not to be used.

The list of prescriptive textbook ‘expert’ and studied knowledge not just shared with us, but intended to be imposed on Pádraig, goes on.

The reason Pádraig is enjoying his food and drinks. The reason he is not on any medication. The reason he doesn’t have osteoporosis even after 10 years in the wheelchair – is not because of ‘expert’ help and advice, but despite of it – because we had enough strength not to follow it, not to give in to it, and instead trust our instinct and experience, and because we were supported by brave health professionals who were ready to follow common sense and the latest research. Even if that was not aligned with current standard practice.

The reason the An Saol Foundation Centre exists is not because the experts had changed their mind. It exists nearly against all the odds and because we found wise men and women who were prepared to take risks. Who were prepared to implement what forward thinkers propose. Who were prepared to let us challenge current practice.

The Journal and The Irish Times last week carried Pádraig’s story, reflecting on the past 10 years. How his life and that of so many other people changed because of the organisation inspired by him.

On Sundays, when we don’t go to the An Saol Centre, Pádraig stands in his standing frame at home – incredibly tall as always. We have created our own exercise programme with ‘boxing’: moving the arms to the right and the left while turning the whole upper body, or the ‘Mexican wave’: lifting both of his arms up above his head as high as possible. Supported by me at his back and a helper for each his left and his right arm. We have our own playlist and often find the perfect songs to match the exercises we all share.

Our experience has been that we are standing on the shoulders of giants.
Ar scáth a chéile a mhaireann na daoine.

Pádraig is one of them.

The nights you fight best are when all the weapons are pointed at you.

Charles Bukowski

The Journal published an article last Tuesday about Pádraig’s accident exactly ten years ago.

The last couple of weeks, and especially last Tuesday, have been hard. Everything came back. The moment when I thought this must be a mistake. The long journey from China to the Cape. Seeing Pádraig for the first time after the accident: connected to tubes, machines blinking, drugged to his ears to keep the pain away and blank out the memory, his head in a white bandage like a mummy, and the black hand-written warning on it: No Bone. My body was being flushed out again, as if someone had plugged the cord. There it was again: the feeling of utter helpfulness in the eye of a catastrophe.

When he was talking about his daughter Peaches, Bob Geldof once said, “Time does not heal, it accommodates – but it ain’t accommodating this.” Though you can learn how to live with it, if you are lucky.

Pádraig has learned to live with his injuries. I have learned to live with it. Most of the time we cope. Sometimes, we do better, we see meaning and purpose, we enjoy life and have fun.

We went away to Tramore, a very traditional holiday destination in Ireland’s sunny southeast. It was good to be away that day. Tramore turned out to be pretty sad, with boarded-up houses and shop fronts, a worn out, tired looking amusement park at the beach front, and the distinct smell of fish and chips blown by a stiff wind across the promenade. The weather was anything but sunny. The place reflected our mood.

We remembered how desperate we were 10 years ago. How lucky we were to be together now, in a hotel, beside the sea, having a nice dinner and a healthy breakfast.

Ten years on, I’m not struggling that much anymore with the accident and what it did to Pádraig, but with what happened after it.

Accidents, as bad as they can be, do happen. There is not much we can do about that. But what happens afterwards is under our control, it is our responsibility. In my mind, there have been very few people who accepted their responsibility, the role they played in the context of that accident. That includes the police, the City of Brewster, the State of Massachusetts, the insurance company, doctors and clinicians. I mean, we had to set up our own rehab facility to give Pádraig and others like him the care they need and have a right to access. There has never ever been a contact, never mind an apology, from the driver, Mr Couto.

The accident was devastating. The injustice is infuriating. Pádraig’s resilience is an inspiration.

This week, he continued to try out new exercises in the gym rack we installed. We are trying to get closer to the duration, frequency, and type of exercises recommended by the WHO for the past decades – for everybody.

I might have mentioned that I have been a fan of Charles Bukowski for a very long time. When I was in my teens, he was the cool guy, the cool name to drop – even though I didn’t really get then what he was on about. It took time. I read one of his poems again and realised that today, I am ready to become a brother of the tender sister of joy. And move on. Regardless. Of all the weapons being pointed at me. Of voices hurling their insults. Of the dream being strangled. Of the game being fixed and the laughter of fools filling the air. Regardless.

The nights you fight best are
when all the weapons are pointed at you,
when all the voices hurl their insults
while the dream is being strangled.

The nights you fight best are
when reason gets kicked in the gut,
when the chariots of gloom encircle you.

The nights you fight best are
when the laughter of fools fills the air,
when the kiss of death is mistaken for love.

The nights you fight best are
when the game is fixed,
when the crowd screams for your blood.

The nights you fight best are
on a night like this
as you chase a thousand dark rats from your brain,
as you rise up against the impossible,
as you become a brother to the tender sister of joy

and move on 

regardless.

Is it fast enough so we can fly away?

Tracey Chapman

The short answer is: it ain’t.

We tried new cars. They were either too small for Pádraig or too big for city driving.

One day, there will be a suitable new hybrid or even a good all electric car that will be fast enough so that we can fly away. For the time being, we’ll have to stick with the one we know and feel comfortable with: a 2012 Kia Sedona.

It is thanks to our families and Pádraig’s friend that we could buy this 11-year old car – at a price that would nearly have got us a brand new one some years ago.

Today was the An Saol Foundation’s Annual Summer BBQ. As always, it was great to see everybody relaxed, laid back, happy, and with no bother in the world.

Pádraig and, to be honest, not just him, was at times a bit smoked out but that did not take away a thing from the brilliant get together of around 50 family members and friends of An Saol.

This day, 10 years ago, I was in Beijing about to go out for an evening in the Opera House, followed by an incredible meal in a French Restaurant overlooking Tiananmen Square. The next day, a whole group of us would fly to Hainan, the “Hawaii” in the South China Sea, to a conference where I had been invited to give one of the keynotes. The latest James Bond movie had been released not too long before that, and I picked the theme song, Skyfall, as the song that was going to guide me through my presentation on the future of the Localisation Industry.

I gave that presentation on the 26th.

The first line of the song, and of my presentation, is “This is the end.”

I thought that I did, but it soon turned out that I didn’t really, know what I was talking about.

Let the sky fall
When it crumbles
We will stand tall
Face it all together

A fast car in Brewster was going to do the unthinkable just the next day.

Look, when I started out, mainstream culture was Sinatra, Perry Como, Andy Williams, Sound of Music. There was no fitting into it then and of course, there’s no fitting into it now.

Bob Dylan

Just thinking…

I’ve been writing for years now about Pádraig and his world following that morning on 27 June 2013 in Brewster on the Cape.

About his courage and my desperation. About a culture that seems to accept the slow death of young people in nursing homes. I have been trying really hard to remain positive, full of hope, and not so much on the attack but encouraging change.

I have quoted Greta and her famous Blah Blah Blah speech in which she makes it clear that we will have to change: We can no longer let the people in power decide what is politically possible or not. We can no longer let the people in power decide what hope is. Hope is not passive. Hope is not blah, blah, blah. Hope is telling the truth. Hope is taking action. And hope always comes from the people.

There were times when I was ready to pack it all in. Imagine: when I was ready to pack it all in — while Pádraig was going from strength to strength.

That time might (will?) come again.

But last week, my head was spinning. Because our combined power very much looked like to begin having an impact: clients and families of An Saol, and the example set by us, our power of hope, our action, led to a meeting in which long-term sustainable funding for An Saol and funding for our own Teach An Saol were discussed in earnest. No public announcement and no press release yet. But that will, no doubt, follow in due course.

We have been telling the truth. We have been taking action. And it all came from us.

---

Pádraig enjoyed our parish’s summer party last Sunday. It was great to meet the neighbours and say ‘hello’ to friends. There was plenty of food, entertainment, and even live-music. We missed the ‘dog show’, but spotted what might have been the winner in the crowd, red hat and all.

We set up a gym rack in An Saol last week and are about to put together exercise programmes for some of our clients who are able and want to use the rack: serious resistance and weight training, in addition to the other exercises they are doing.

Check out these guidelines by the WHO. Here is an extract covering Adults Living with Disability.

---

Adults living with disability:

• should do at least 150–300 minutes of moderate-intensity aerobic physical activity; 
• or at least 75–150 minutes of vigorous-intensity aerobic physical activity; or an equivalent combination of moderate- and vigorous-intensity activity throughout the week
• should also do muscle-strengthening activities at moderate or greater intensity that involve all major muscle groups on 2 or more days a week, as these provide additional health benefits.
• As part of their weekly physical activity, older adults should do varied multicomponent physical activity that emphasizes functional balance and strength training at moderate or greater intensity, on 3 or more days a week, to enhance functional capacity and to prevent falls. 
• may increase moderate-intensity aerobic physical activity to more than 300 minutes; or do more than 150 minutes of vigorous-intensity aerobic physical activity; or an equivalent combination of moderate- and vigorous-intensity activity throughout the week for additional health benefits.
• should limit the amount of time spent being sedentary. Replacing sedentary time with physical activity of any intensity (including light intensity) provides health benefits, and
• to help reduce the detrimental effects of high levels of sedentary behaviour on health, all adults and older adults should aim to do more than the recommended levels of moderate- to vigorous-intensity physical activity.
• It is possible to avoid sedentary behaviour and be physically active while sitting or lying. E.g. Upper body led activities, inclusive and/or wheelchair-specific sport and activities.

---

At least the WHO have realised that, paraphrasing Dylan slightly, Sinatra, Perry Como, Andy Williams, Sound of Music ain’t mainstream no more.

You don’t need a weatherman to know which way the wind blows, is another great quote by Bob. There are real, believable indications that the times they are-a changing.

Because we never gave up hope.

Just thinking…

Sometimes the first duty of intelligent men is the restatement of the obvious.

George Orwell

You might know the parable of the Blind Men and an Elephant. I like that story because it illustrates really well that the same thing appears very different to different people. There is also the concept of inattention blindness, where a person, for whatever reason, and there can be different ones, is not paying attention – even though the stimulus is directly in front of them. I am sure there are many other example why people sometimes do not see the obvious.

But there are times when I cannot find an explanation —

Everybody needs movement. It is our senses that connect us to the world: sight, hearing, smell, taste, touch. Depriving someone of those sensual experiences amounts to torture. That’s what they do in Guantanamo Bay. – Yet, it seems to be ok to do this to those with a severe Acquired Brain Injury (sABI), in the interest of health and safety, of course. And the budget.

I am still looking for a comedian who could pick this up and bring it to his stand up comedy show.

Doctors and clinicians are organising conferences around the world and are spending a fortune in research (and travel) to establish when it makes sense to allow those with a sABI access to the world around them, using their senses — without having a worry in the world about the valuable resources they spent on those trips and conferences.

Which in my mind could make another topic for a good night out in the Comedy Club.

A line in Eddie Vedder’s song Society is that when you have more than you think (or society thinks) you have, you need more space.

Pádraig had a bit of that space again last week. In the park, with a bun and a hot chocolate. And good company.

And a bit of a workout to loose some of those calories.

In An Saol, we had a German visitor from Austria (!:) who wrote the book on Functional Electrical Stimulation in Neurorehabilitation. In addition to sharing some of his knowledge and experience of decades of working in the field, he also brought along a new device which will become available in a few weeks and will make it not just possible, but also easy, to use eStim, including for home use.

It was amazing to see how Pádraig could sit up and pull back his shoulders with the help of eStim.

Other clients were able to do things they usually, and some for a long time, could not do.

The idea is not, to just move with the support of eStim, but to encourage the awakening of dormant connections to the brain and, in an ideal case, to support and encourage the development of new ones.

Not from one day to the next, or after a once-off use, but following a long, regular and consistent application of eStim.

Thomas A. Edison once said that Opportunity is missed by most people because it is dressed in overalls and looks like work.

He was, obviously, right.

PS: Just in case and because you never know, I want to make it crystal clear that I do not believe that any of the material above recommended to a comedian is in any way funny. It is, in fact, so depressing and so terribly sad that it I find myself with tears in my eyes far too often. I find it terrible, irresponsible, and medieval. It makes me mad. I have found that in impossible and totally absurd situations, humour and laughter are the only strategy to stay sane.

To the graduating class of 2023, I say three words: You Poor Bastards.

Patton Oswalt, actor and comedian, William & Mary

The Guardian Newspaper recently published an article with words of wisdom at commencement ceremonies across the USA by Oprah Winfrey, Tom Hanks, Karine Jean-Pierre, and others.

When Patton Oswalt described the Class of 2023 as “Poor Bastards”, he referred to fact that democracy’s crumbling, truth is up for grabs, the planet’s trying to kill us, and loneliness is driving everyone insane.

He explained: You are about to enter a hellscape where you will have to fight for every scrap of your humanity and dignity. You do not have a choice to be anything but extraordinary. Those are the times you’re living in right now.

He continued: Everything that we let calcify, you have kicked against and demolished. You’ve rejected that whole 24/7, no-days-off grind. You’ve rejected apathy. You’ve rejected ignoring your mental health because “you’ve gotta muscle through it no matter what”. You’ve rejected alienation and cruelty. You’ve rejected not trying to include everyone. And you’ve rejected not looking out for each other.

His advice: Make life memorable: And those are hard things to reject. Because accepting them sometimes makes life way easier. If you just shut off yourself from the world, life is way easier. It’s also way less colorful, way less complicated, way less nourishing, and way less memorable.

Although Pádraig is not of the class of 2023, he graduated 10 years ago, these words describe him and what he has been showing to us over the past ten years. And the people around him, accompanying him along the way.

Last week, he went to Griffith Park with two of his PAs, where he used, with a little help from his friends, Dublin City Council’s (DCC) exercise equipment.

This is all about trying to include everyone. About participation and equality. About having fun in good company.

It’s so easy that you wonder why it could be any other way? – We’re not poor, we’re lucky bastards!

I think I need to find a bigger place
‘Cause when you have more than you think
You need more space

Eddie Vedder, Society

They had all been talking in their own language but this day, on Pentacost, they understood each other.

We’ve been listening a lot to the soundtrack of Into the Wild lately, by Eddie Vedder. The more I listened to it, the better it got.

One song, Society, changed my thinking.

When we talk about the human rights of people with disabilities, their right to inclusion, equality, company, participation, we always do this from the perspective of Society. The perception is that the person has a right not to loose Society. Which is one, maybe the correct?, way to look at it.

But what if it was Society who was loosing out not integrating those with a disability, isolating them, getting them out of mind and out of sight – which is what the reality is for many, especially for those with a sABI.

For whatever reason it never seems to dawn on us how much worse Society, how much we, would be off without them? How much Society would loose not having them around? Have you ever thought about this?

I didn’t know always, to be very honest, but I do know now that I would not be who I am, that I would be incomplete without Pádraig and what he is giving me.

We need to turn things on their head at times.

Here are the last picture from our trip of a lifetime.

A walk through Victoria, Canada, passing. by the “Irish Times”. A day room in the cheapest Seattle airport motel, the kind where you’d expect to see Norma Bates. A Chinese looking road sign which we only understood on second thoughts to mean: No pedestrian crossing. A traffic light sign making sure that all angles were covered. My new watch telling me what I already knew.

The Decision Support Services (DSS) have made available the background story videos of their nine Champions, Pádraig being one of them.

They have also launched their TV ad campaign you might have seen on the telly. Pádraig was watching it the other day on RTÉ One.

Even if we speak the same language we need to be inspired to understand each other.

Even if we think we understand each other, we need, at times, to consciously try and see ‘reality’ from different perspectives.

Pádraig couldn’t stop smiling when we shared stories from his Alaskan adventuress.

Sometimes I wonder whether he needs more space, because he has more than we think, and he needs space for it.

We need to give that space to him, even, or especially, if he cannot ask for it himself.