Moments

Sometimes it’s worth the wait.

Days, months, years. To catch the perfect moment. Or to finally reach a goal you set yourself. Or to see something come to fruition you thought you’d already lost.

Last week, Cúram Phádraig, Pádraig’s carers and personal assistants, got the notification that they will receive the first shot of the Corona virus vaccine over the coming days.

Pádraig himself, it seems, will have to hang in and wait a little longer.

There is no logic to it, none that I can see anyways. We all know what would happen did Pádraig have to go into hospital with the virus and required a serious intervention.

The thing is: the world does not function on the principle of fairness and logic.

In my previous life, working with languages, someone once asked me, “What is the difference between a dialect and a language?” When I started to set out on a complex explanation, he interrupted me and gave me the answer: “An army.”

Is it the army, the use of force, that makes all the difference in our world?

Do we really have to go on the attack in order to achieve our goals, to see something come to fruition?

This is certainly how we in the West often see it. On the world stage in the form of missiles. In our personal lives in the form of heartless, harsh, uncaring, competitive behaviour.

I remember two really good things from last week.

One was observing Pádraig’s left arm when he was walking in the Lokomat. Often, he keeps his arm up, pressing his hand against his shoulder, and finds it hard to relax it. Look at the picture above. He is holding on to the walking bar and his arm ist nicely stretched out to 90o. Because he is doing something meaningful with the arm, something he wants to do – not something he has to do because that is the ‘exercise’.

The other was the immediate help from a wheelchair technician of our local wheelchair clinic coming out and delivering the spare part we needed to fix Pádraig’s headrest after it had snapped. Getting an appointment in the wheelchair clinic normally means waiting to a point when you nearly give up. It was brilliant to see that when something was required with urgency, the system worked. And the technician went out of his way to help.

Going back to the friends in my former life. One gave me another quote, from an Eastern philosopher and war strategist, Sun Tzu. His advise is the exact opposite to our Western kind of thinking and approach.

“If you sit by the river long enough, you will watch the bodies of your enemies float by.” – Sun Tzu,  The Art of War

Sometimes, it’s worth the wait in order to achieve our goals, to see something come to fruition. Days, months, years. In the meantime, we can always enjoy the good moments that life brings.

And consider whether the world should be divided into enemies and friends at all. Whether there has to be an “us” and “them”. Whether there might be an alternative where we treat each other with respect and dignity and love and understanding.

Carry each other.

One.

Pilot

Pilot project giving brain injury survivors a better life.

The Irish Times, 23/02/21

As Pádraig Schaler’s arms and legs start to move in very slow motion above the treadmill, it appears for a moment as if he is suspended in zero gravity. But soon his black Nike runners are striking the rubberised track and his stride begins to quicken.

With eyes closed in an expression of contentment under a mop of brown hair, his 6ft 7in frame is upright and moving by means of a robotic exoskeleton suit supporting him from the top of his head to the base of his feet. His mode of transport for the other 23 hours of the day, a wheelchair, stands empty to one side in the An Saol neuro-rehabilitation centre in north Dublin.

It will be eight years ago this summer since Pádraig headed off to the US on a J1 visa, having just completed his undergraduate studies in Irish and history at Trinity College Dublin. Cycling to work in Cape Cod on June 27th, 2013, he suffered a severe brain injury when his bike was hit by an overtaking truck.

You panic, you fight and then you fundraise. This should not be about charity

Ever since, his parents, Reinhard Schaler and Pat O’Brien, have fought tirelessly against medical and societal writing off of their son, and other survivors of severe brain injury, as hopeless cases. At the outset, in the US hospital, doctors talked to them on several occasions about organ donation and “that scared us”, says Reinhard.

The couple arranged for their son to be flown home to Beaumont Hospital in Dublin two and a half weeks after the accident. They were told he would have to wait a year to get into the National Rehabilitation Hospital (NRH) in Dun Laoghaire, Co Dublin, for three months of assessment and treatment. The couple took him to Germany instead for treatment and rehabilitation and ended up spending more than two years there.

“This made all the difference because there we learned how a different system works,” says Reinhard. It is knowledge they have been using to try to improve services in Ireland for Pádraig and others with a severe acquired brain injury (sABI).

While the couple must vocalise on their son’s behalf as he has no speech, Pádraig makes his views known through using finger movements, for instance, to answer yes and no to questions and can rate anything, from his bodily comfort to his view of a TV programme, by tapping a scale of 1 to 10.

“A doctor once said to me ‘I hear gallop and I think horse’. But sometimes it is not a horse,” says Reinhard. “You see Pádraig and you think, he doesn’t move, he doesn’t talk. A normal person’s perception is that there isn’t much going on, the lights are out. That is absolutely not the case. Pat discovered he can [still] read and write. Pádraig laughs, not at my jokes but his sisters’ jokes, he hasn’t even changed.

“He has always gone for the most expensive food,” Reinhard says with a smile. “If we go anywhere, he knows what he wants. He enjoys the company of his friends. He votes; same party and same candidates as before.

“He can do Who Wants to be a Millionaire questions; he can sum up numbers and give you the result. He is well able to communicate, if we give him the means.”

Pádraig was the inspiration behind their setting up of the An Saol Foundation in 2014 to provide adequate and ongoing support for people with a sABI. It is now running the first community day centre that can offer them ongoing neuro-rehabilitation.

Based in Santry, the doors opened in January 2020 only to have to close again two months later in the first lockdown. But since reopening last July, it has been able to continue to operate throughout Level 5 restrictions, albeit at a reduced level.

It is a three-year pilot project, with €1.5 million funding from the Health Service Executive (HSE), aimed at showing how An Saol can deliver neuro-rehabilitation in a new way, based on research and well-established practices in countries such as Germany.

The idea is to offer an inclusive, neuro-rehab programme five days a week, covering physiotherapy, occupational therapy, speech and language therapy, as well as cognitive, music and trauma therapies, along with social activities and family programmes. In a technology room, clients can be trained in communication aides, such as eye tracing.

Currently, some clients funded by the HSE attend in the morning while private clients with funds, say from settled insurances cases, come for therapies in the afternoon.

It has long been recognised that the pathway to rehabilitation in this country more or less runs out for people with an sABI after they leave the NRH – if they are lucky enough to get a bed there in the first place.

In theory, follow-up therapy is provided through community clinics – that is, if a brain injury survivor can go home, because too often a nursing home is the only option for severe cases. However, community clinics are not set up to provide lifelong support, which is what most people need, says Reinhard. “What we are doing here, not by design but by accident, fits right into the HSE strategy of trying to get people out of congregated settings.”

But, to survive in the community, they need back-up.

Instead of people having to find their own therapists, “wouldn’t it be better if there was a place where families could be centrally involved, their voice would be heard and having access to the kind of services that they need?” he asks.

Brain injury

Catherine Cahill comes to An Saol with her son David (34), who suffered a brain injury at the age of 21 through several heart attacks while on holiday in Crete. He was in a nursing home for six years, before she managed to managed to get him back into their Ballymun home. “It’s so good for him,” she says of the stimulating physical therapy he receives at An Saol.

Reinhard sees it very clearly as a human rights issue. “It is about the right of people to live their life in the best possible way and that is the core of everything,” he says.

He recalls how a neurologist said she understood the personal tragedy involved in an sABI but that they had to understand that the limited resources of a health system had to be invested in patients who had a reasonable chance of recovery.

He took that to mean you spend on people who can be healed and everything else is a waste. But it’s not, he argues. Look, for instance, at how the hospice movement has evolved to help people to die with dignity. “If as a society we help people to die in dignity, why we do we have problems helping people live with dignity?” In looking at how to make that happen, he says: “I am convinced it is not a financial question, it is an organisational question.”

What the An Saol centre offers families is not more expensive, he says, “it is more specialised and more targeted, and it is based on the latest research and knowledge in relation to neuro rehabilitation”.

Reinhard has struggled with knowing that politicians and medics in this country have recognised for many years how survivors of severe brain injury are so often consigned to an existence of “nutrition, hydration, medication”, yet have done little about it. The Neuro-rehabilitation Strategy published in 2011 by the Department of Health and the HSE acknowledged the many gaps in services, but another eight years passed before a three-year framework, From Theory to Action, was published in 2019.

That framework looked at what is specifically needed after acute hospital care, says Mags Rogers, executive director of the Neurological Alliance of Ireland (NAI). This ranges from treatment in the NRH, or equivalent, to the likes of An Saol, residential centres, respite; “basically, it’s the wraparound for people living longterm with brain injuries or other neurological conditions,” she says.

The NAI estimates that just 30 rehabilitation beds have been added since 2011. “We should have a minimum of 288 beds based on international estimates for our population size. We have about half that,” says Rogers.

While there is a rollout of a national trauma strategy for acute hospital care of the estimated 1,600 patients a year in Ireland who suffer multiple injuries, most of whom are unlikely to be unscathed neurologically, there is no side-by-side neuro rehabilitation developments, she says. It has been estimated that less than 10 per cent of people with major trauma are getting access to specialist rehabilitation.

“Our trauma care is very, very good and getting better,” says Rogers. “We are saving people who we never would have saved.” But we are falling down on rehabilitation.

Referrals to the NRH are increasing, so patients are receiving shorter periods of rehab because they want to get the next person in, she says. The building of the new hospital there did not increase the number of beds.

“The further you are from Dublin, the less likely you are to be seen by a neuro rehabilitation consultant and less likely to be referred to the NRH.”

There was a plan to put a multi-disciplinary neurological rehabilitation team into each of the nine Community Health Organisation (CHO) areas by the end of this year. “Since late last year, they have funded partial teams in two CHOs, six and seven, in the eastern half the country,” says Rogers.

Meanwhile, families like Pádraig’s who knew absolutely nothing about brain injuries until they were directly affected, are trying to improve the system for their loved ones. “If we don’t do it, nobody else will,” says Reinhard. He has seen other families go through the same cycle when tragedy strikes: “You panic, you fight and then you fundraise. This should not be about charity.”

The An Saol day-care centre has not been set up by professionals or by a company or by the HSE, but by families, he points out. While he and Pat took the initiative, others have collaborated and been consulted, as have therapists, in planning the best way forward. “There has been a lot of learning. It is really implementing what the HSE has been saying about patient centred care.”

Support

He pays tribute to Finian McGrath, a former minister of state for disability issues, and local TD Róisín Shortall for their support in helping to make it happen, and Simon Harris who, as minister for health, secured the €1.5 million funding from the HSE – €500,000 for equipment and €330,000 a year to run it for three years.

The section of the centre where Pádraig walks for 45 minutes a day, as rehabilitative exercise specialist Barry Moore adjusts the speed and weight bearing, is named the “Sara Walsh robotic gait therapy area”. She was two beds away from Pádraig in Beaumont Hospital and both their families got to know each other well.

Sara, an electrical engineer, was 28 and married just four months when she suffered a brain injury in October 2011, after a biopsy on what turned out to be a benign brain tumour. She spent two years and three months in Beaumont before getting a bed in the NRH.

From there she was transferred to Donnybrook hospital, but her family managed to get her to what her mother Mary describes as “rehabilitation boot camp” in Germany where therapists got her back up on her feet and dispensed with peg feeding.

During her time there, Mary recalls how Sara’s sister came over to visit and asked a therapist if she could try something on a keyboard with her. Sara then joined her sister in playing a duet they knew as children and she was “note perfect”, says their mother, breaking down at the memory.

But soon after their return to Ireland, it was discovered that Sara’s brain tumour, which was inoperable but had been treated with radiation, had grown back and she was transferred to Blanchardstown hospice, where she died on June 17th, 2015. After their daughter’s death, the family passed on funds that had been raised by well-wishers for her ongoing care to Pádraig’s parents.

It was this that got the An Saol Foundation off the ground. “It would have been so easy for them to take that money and pour it into Pádraig,” says Mary, “but they have worked tirelessly for other people too.”

Sara “loved” the robotic gait therapy she received in Germany, her mother adds. So there is nowhere more appropriate for her name to be enshrined, than where brain injury survivors can enjoy the benefits, as we all do, of being upright and moving.

Matthieu

While it may be difficult to change the world,
it is always possible to change the way we look at it.

Matthieu Ricard, 69, is a Tibetan Buddhist monk originally from France. He has been called the “happiest person in the world” by several popular media. He has spent a total of 5 years in solitary meditation, largely in a remote mountain hut.

If you want to be happy, Ricard says, you should strive to be “benevolent,” which will not only make you feel better, but it will also make others like you better.

If a buddhist monk and not Elon Musk or Jeff Bezos is the happiest person in the world – why is it money what we all strive for? If part of becoming the happiest man in the world is to live on your own in a remote mountain hut – why are we killing ourselves (and the planet we live on) trying to gather more material possessions?

Last week, Pádraig had one of the biggest laughs in a long time. It was a situation that was right down his alleyway, the timing was perfect, and the company was just right. It was one of those situations we live for. Totally relaxed, in good company, and happy.

It was last week too, that I met someone who had suffered a spinal injury some years ago. For me, he was the nicest, kindest, most generous and friendliest man I could imagine. He made a most generous donation to An Saol: equipment he no longer needs.

Then I met a business man who wants to help us increase the awareness for technological aids and supports by helping us to showcase them in An Saol. And there was a student who is going to design the best possible method for Pádraig to access gadgets, from a drone to a communications programme. His idea is to design a mouth piece equipped with sensors which can be triggered by tongue movement.

And to look at the emego-switch which senses muscle movement using EMG technology, triggers a switch and can be used to control anything from communication software to wheelchairs and environmental control technology.

In the meantime, Pádraig continues to train hard for the Iron Month.

Pádraig cannot change what happened to him. But he has found a way to live his life with that change. He has no material possessions. He hardly controls his body. But his mind is there and he has decided to live his life to the fullest possible extend. He has moments of great fun, as we do, when the situation is right.

You don’t have to live in a hut in a remote mountain range
to experience happiness.

As Christopher McCandless said:
Happiness is only real when shared.

William

“At some point we will all confront a dark moment in life. If not the passing of a loved one, then something else that crushes your spirit and leaves you wondering about your future. In that dark moment, reach deep inside yourself and be your very best.”
Admiral William McRaven
 
You might not know Naval Admiral William H. McRaven, ninth commander of U.S. Special Operations Command. You might have heard about the famous speech he delivered at the University-wide Commencement at The University of Texas at Austin on May 17 to the Class of 2014. “What starts here changes the world.”
 
I am not that much into the military. But that speech and his “few suggestions that may help you on your way to a better a world”, the ten lessons he shared to change the world for the better, are some of the best motivational insights I’ve heard from anyone.
 
I have often wondered why we ignore some truths we know and understand. Those everybody knows.
 
Can you think of an example?
 
Here are a few I can think of.
 
We know that we are destroying the planet and we know what we need to do to save it — but we ignore it. We continue buying cheap, throw away clothes; we continue buying expensive smartphones made with rare metals destroying the environment when they are harvested and when they are disposed of. We know Old Black Joe’s still picking cotton.
 
We know that there are people who need our help which we don’t give to them. Because the money isn’t there.
 
Really?
 
Excuses. Excuses.
 
We are ignoring those truths because we are busy with life. Because we don’t have the motivation to do anything about what we all know is wrong.
 
It takes people who are motivated enough to affect change.
Because they will not let go.
 
They will make their bed every morning, find someone to paddle with them, measure people by the size of their heart, they will keep moving forward in the knowledge that life is not fair, they will fail, but slide the obstacles head first, they will not back down, step up when times are toughest, sing when they are up to their neck in mud, and they will never, never give up.
 
Pádraig is preparing for the Iron Month Challenge.
 
He walks for nearly an hour every day.
 
 
And today, he broke his personal best, his PB, cycling 5k in 45 minutes. In his second cycle for the day.
 
 
There is no giving up.

A touch of madness brightens up life. – Un brin de folie égaye la vie.

As another great French proverb says:
 
In order to achieve great things,
we must live as though we were never going to die.
Pour exécuter de grandes choses,
il faut vivre comme si on ne devait jamais mourir.
 
 
 

Greta

“We are striking because we have done our homework, and they have not.”

Greta Thunberg
at the climate protest in Hamburg, Germany, 1 March 2019

When I was Greta’s age, I was afraid of war. I protested against nuclear rockets being stationed in Germany. But I never went on a school strike, if I remember correctly. And, as far as I know, I never caught the attention of an American President.

I was ‘chilled out’ without anybody having to tell me. I don’t think I was even too angry about what the older generations were doing. They were a lost cause, not really worth worrying about too much. I had tons of fun playing guitar, singing, being with my friends, making fun about the threat from the East. While I wasn’t part of the ‘No Future’ or ‘Drop Out’, Null Bock Generation, I knew I was not going to achieve World Peace. If they wanted to push the Red Button, they were going to do so anyway and there was nothing I was going to be able to do about it.

A few decades later, I am wondering: Is there something like ‘futurisation of the past’, or ‘archeology of the future ‘? Is the future ‘destiny’ or can we determine it by our actions?

Difficult questions don’t have a black and white answer. There are things in life, in our future, that we cannot determine or influence. And there are things which we can absolutely make or not make happen.

We can do things to change the future. And things that have a purpose, things that make sense, things that have meaning, are easier to do than boring purposeless things.

Here is an example: if you want to improve the movement of your hands and your fingers, you could just open and close your hands a few times – as an exercise; or you could practice your grip, hold on to something and then squeeze it so much that it flops out of your hand – like a bit of soap.

 

In the process you wash your hands thoroughly and have a bit of fun letting the warm water swash around your fingers and hands.

All of a sudden, there is an obvious, immediate reason to move your hands and fingers and it feels nice being able to do it. The motivational barometre goes up sky high. As a result, your hand movements and your coordination gets better and better. It’s an action to influence the future.

We know that if we don’t move, our organs will shut down and we will die. We know that keeping fit will keep us healthy. We know that our actions will destroy the planet. And we know that if we wash our hands regularly, we help to prevent the spread of infectious diseases.

Greta has done her homework. She knows the difference between destiny and futurization, the idea of predicting potential outcomes of our actions.

Greta also knows that many people have not done their homework, many of them in power. When will they ever learn?

I have changed my mind. I will go for world peace. Save the planet.
Create a life worth living for those who have been written off.

Pete Seeger: Where Have All the Flowers Gone?

On July 26, 1956, the House of Representatives voted 373 to 9 to cite Pete Seeger and seven others (including playwright Arthur Miller) for contempt, as they failed to cooperate with House Un-American Activities Committee (HUAC) in their attempts to investigate alleged subversives and communists. Pete Seeger testified before the HUAC in 1955. In one of Pete’s darkest moments, when his personal freedom, his career, and his safety were in jeopardy, a flash of inspiration ignited this song. The song was stirred by a passage from Mikhail Sholokhov’s novel “And Quie Flows the Don”. Around the world the song traveled and in 1962 at a UNICEF concert in Germany, Marlene Dietrich, Academy Award-nominated German-born American actress, first performed the song in French, as “Qui peut dire ou vont les fleurs?” Shortly after she sang it in German. The song’s impact in Germany just after WWII was shattering. It’s universal message, “let there be peace in the world” did not get lost in its translation. To the contrary, the combination of the language, the setting, and the great lyrics has had a profound effect on people all around the world. May it have the same effect today and bring renewed awareness to all that hear it.

Karl

“The problem with the world is that the intelligent people are full of doubts,
while the stupid ones are full of confidence.”

Heinrich Karl, better known as Henry Charles, Bukowski is not everybody’s cup of tea, or whatever you’re having yourself.

He was one of those writers you had to read when I was growing up, along with others, like Kerouac and Ginsberg and Castaneda. They were the literary equivalent to Dylan, Cohen, Joplin, Seeger and Guthrie. My first attempts to like them resulted in the same reaction I had when I puffed my first cigarette or drank my first glass of beer: awful. I kept trying. And the effort paid off. While I switched over from beer to red wine over the years. And I stopped smoking altogether. I ended up liking those poets and singers.

Over the last few weeks, I started to think that I should organise an IronMann Challenge. Pádraig liked the idea. I liked the Germanic sound of it. Then someone suggested to call it IronMonth, because this is the time it’ll take us to do the classic super triathlon distance: 2.4 mile swim (3.9K), 112 mile bike (180.2K), and 26.2 mile run (42.2K). Pádraig could walk the distance on the Lokomat, cycle on the MOTOmed, and get some help from his friends with the swimming. We’d be joined by the An Saol team and invite the rest of the world to join as well, all to the best of their abilities, all full of confidence, nobody left behind.

I’ll join too, each day doing the same amount of walking/running and cycling Pádraig will do, in terms of time effort. I would even try to come up with a creative solution to the 2.4 mile /  3.9 K swim, should the swimming pools not have opened by the time we’ll do this, say in April or May.

We would post daily updates and reports. Make it fun. Do it with friends and supporters around the world all to the best of their abilities. Share tips for recovery periods and good nutrition. And raise funds for the An Saol Foundation’s development of the Neurological Rehabilitation Centre in the process.

We know that we all need regular exercise and physical fitness. All of us, without exception. And we will demonstrate that all of us can have regular exercise, get fit and finish this extraordinary IronMonth. With a little help from our friends. We’ll leave nobody behind and we’ll give all we have to meet this challenge. As any other challenge we’ve met in our lives.

“If you’re going to try, go all the way. Otherwise, don’t even start. This could mean losing girlfriends, wives, relatives and maybe even your mind. It could mean not eating for three or four days. It could mean freezing on a park bench. It could mean jail. It could mean derision. It could mean mockery–isolation. Isolation is the gift. All the others are a test of your endurance, of how much you really want to do it. And, you’ll do it, despite rejection and the worst odds. And it will be better than anything else you can imagine. If you’re going to try, go all the way. There is no other feeling like that. You will be alone with the gods, and the nights will flame with fire. You will ride life straight to perfect laughter. It’s the only good fight there is.”
                                                        ― Charles Bukowski, Factotum

Let’s be stupid for a month. Full of confidence. We know we can make it.

Would you join us?

Edith

“Our painful experiences aren’t a liability—they’re a gift. They give us perspective and meaning, an opportunity to find our unique purpose and our strength.”

Writes Edith Eger in her book The Choice – Embrace the Possible.

She is 93 years old. When she was 16, in 1944, she was deported to Auschwitz together with her parents and her sister. She survived and published The Choice in 2017 and The Gift in 2020, relating her story of survival and the lessons she learned from her experience. She emigrated to the USA, became a friend of Victor Frankl, received a PhD in Clinical Psychology and works as a psychologist. She believes that while we cannot control what life holds in store for us, we can always choose how we deal with it. The most important question is not why me? but what now?

Pádraig continues with his visits to the Hyperbaric chamber, breathing oxygen at the same pressure one would experience 10m below water.

Each visit lasts just over an hour and there isn’t much happening in that chamber. So we play a finger game.

With one finger. And then the other. It creates a connection and makes us both smile.

The weekend is quiet. On Saturdays, there is no schedule determined by people coming and going. Time to relax.

It is anything but boring. It’s nice, calm, and gives us time to chill out. Probably hard to understand for those who fear for their mental health because they have watched Netflix back and forth, as well as the last episode of the last season of the reality show The Whitehouse.

Over the last weeks two dear people in our life passed away.

Mary Geran was Pádraig’s, his sisters’ and Ireland’s most iconic swimming coaches. She sadly passed away on 11 January. She coached Pádraig when he was small (he was ‘small’ at some stage) and again, more recently and for the last time, with her same unmistakable, distinct voice from the pool side, when he came back to Dublin after his accident, in a pool especially kept open for him by his former coaches, Mary and her colleague and good friend, Patricia, with his sister and myself helping him in the water.

Her funeral had to take place in private because of the current circumstances. But, together with old friends, Pádraig said his good-bye in front of her house. Watching the cortège passing by and talking about Mary, brought tears to his eyes. They changed into a huge smile when we stayed on for a few minutes to say ‘hello’ to old friends he hadn’t seen in years – all distanced and with masks but well in sight.

Ni bheidh mo leitheid aris ann. With Mary, a whole generation and character of people is disappearing. The pool, the kids she taught and coached, were her life. More important than her commitment to achieving the best possible results in galas and competitions, was her commitment to the welfare of the kids she cared for. She was a tough coach with a huge heart. And a great sense of humour. The likes of her will never be seen again.

It was my dream to sail around the world. Unfortunately, I failed to convince my family that this would be a great idea and an incredible adventure. Except for Pádraig, who experimented with his Dreamboat. He would have loved the journey. He wrote the most beautiful note telling me that, after much thought, he had figured out how we could organise that fantastic trip and how I could realise my dream.

Again, unfortunately, I was the stupid, ‘realistic’ adult, too constraint by all sorts of ‘practical’ issues and ‘good, solid’ reasons why this was a beautiful plan but not much more.

Two months before I turned 50, I grabbed the opportunity to join a small former hering boat turned sailing ship, its Dutch owners, a family of four, and some random crew of 12 – not to sail around the world, but to cross the Atlantic as part of the 2009 Tall Ship Challenge.

A few days ago, I heard that Peggy, the wife of my mate James on that incredible adventure, passed away last week. I met James first when I boarded the Tecla in Halifax, the day before we were going to sail across the Atlantic. We spent the next few weeks together on our four-hour watches, from 2-6 am and pm. One early morning, when we went back to our bunks, cold and wet from the ferocious North Atlantic storm outside, James told me that he had decided that next time he was going to cross the Atlantic, it would be with his wife on the Queen Elisabeth. We laughed our heads off at the ridiculous thought of it. (Only a couple of years later that thought became a reality.) When, weeks later, we eventually made it into Belfast harbour, Peggy was there at the pier, welcoming James back on firm land. She had worried a lot about all that could have happened to him and was overjoyed to have him back. The couple spent some time in Ireland with their children and visited us in Dublin. When I heard that Peggy had passed away following a terrible fight with cancer, I could only imagine what pain and sense of loss James must be going through.

Nobody can avoid the pain and suffering life inevitably confronts us with. One terrible pain cannot be compared with another terrible pain. Their is no pain league table. But I would agree with Edith Eger that we have a choice to ask ourselves why me? – or what now?

One is the question of a victim, the other a question of a survivor.

Adapt

There are some really iconic images. This is one.

It’s not staged. There is no expensive and artistic setup.
This is real life. As real as it gets.

You might have to look closely at the picture above.

What I want you to ask yourself is: If you had to plug in a two-pronged plug into one of the available sockets which one would you choose?

On the left, there are two network sockets which you surely wouldn’t try.

That leaves two (Irish) standard sockets for three prongs, with one having an adapter for international plugs.

The temptation to follow the well established regime of plugging a plug into a socket must be enormous. Even if the plug is not really made for that socket you make it fit. Because that is what you do: you put the plug into the socket. Never mind that stupid adapter.

There is a noticeable stretch in the evening now. Days are getting longer and a little brighter. Pádraig and I went for a good walk into the Botanic Gardens today.

He was supporting his head with his left hand as we went into the “Wild Ireland”, a part of the Botanics introducing visitors to the generally well-kept and meticulously planned Gardens to the Wild. A bit of a contradiction but still a great experience, especially if you’re living in the middle of the City. We saw this huge tree with what looked like tons of nests hanging from it. Are those really nests or are these some type of plants using the tree as their host?

Pádraig is cycling his MotoMed better than ever before. Up to 40 rounds per minute, against some resistance, for 45 minutes, a distance of nearly four and a half kilometres, using both of his legs in nearly perfect equal measure.

While he is cycling he is eating and drinking (for energy) and when he is finished he lifts both of his feet out of the pedals.

This is keeping him so fit that it makes me feel jealous. Yes, he is young and, before his accident, was always fitter than I could ever dream to be. And if I think of it, why should that now be different? Because he had an accident seven years ago?

Pádraig has adapted to his condition, the way he is.

My guess is that he could easily do the ironman distance of a 180.2km on his bike, even if it was over a number of days. And he could run the ironman distance of 42.2km in the Lokomat, over a similar number of days. The 3.9km of the ironman swim would have been the easiest part of the triathlon challenge – if swimming pools were open or if we lived on an island surrounded by warm waters and not by the Atlantic and the Irish Sea.

It’s not always the smartest thing to follow the usual regime and practice. Sometimes you have to adapt to get results and motivation and meaning. Or the right socket.

I want to think about that one a little more.

Joan

There but for fortune, love is just a four letter word, the night they drove old dixie down, Joe Hill, diamonds and rust, we shall ovedrcome – definitely.

She sang at the Newport Folk Festival in 1959 for the first time and, ten years later, in 1969, of course, in Woodstock.

It was she who made the songs of her young, a little rough looking and completely unknown friend, Robert Zimmermann, or Bob Dylan, world famous. She mostly sang covers and it was he who gave her almost supernatural voice songs that expressed her thoughts and feelings. In later years, Bob talked about his relationship with Joanie, and invited her to join him on the Rolling Thunder Review, documented in the 2019 movie by Martin Scorsese.

She was eighty yesterday.

She gave a concert in Dortmund’s Westfalenhalle, I forget the year, where I experienced her absolute magic. It’s one of Europe’s biggest indoor venue. She sang, alone and completely solo, playing the guitar, in front of 16.000 people, completely stunned by her.

We were in the An Saol Neuro Rehab Centre one day last week getting ready to go, when Pádraig decided to continue exercising. In and with his wheelchair.

He started doing it all on his own and then, when we encouraged him, continued doing it. No cramps, contractures, or involuntary movements. This was slow and controlled and voluntary. He did this after four hours of therapy. Was he tired or exhausted? To me it looked like as if he was just ready to get going.

It proofed to me that we can be very wrong when we are trying to protect people like Pádraig by not challenging them, by going easy on them, by assuming tiredness when there is energy that needs to be put to a purpose.

We will overcome one day. Because we will continue the Dreamboat journey, being lead and encouraged by people who for many look so vulnerable and desperate that they nearly would prefer to forget them altogether.

Here is to Joan and her eightieth Birthday, her great voice and unbroken spirit.

We will overcome. One Day.

Who

Joe Biden and Kamala Harris were named the Time Magazine’s “Person of the Year“. Who is your person of the year?

The Time Magazine made clear that the nomination is never only about the past, but also about the future. Joe Biden said that he is seeing “an outpouring of joy, hope, and renewed faith in tomorrow to bring a better day”. Kamala Harris frequently quoted her mother who told her “you may be the first to do many things, make sure you’re not the last”.

I found it incredibly difficult to decide who would be my Person of the Year. In any case, it had to be a nomination relevant for the future.

There are the therapists and doctors in Burgau, Munich and Pforzheim who recognised what caused Pádraig’s terrible pain in his hip over the past year and who were able to help him with a relatively small intervention so that he now can move his right leg again and can sleep through the night.

There are my colleagues in the An Saol Foundation who kept our Neurological Rehabilitation Day Centre open and running – after a months’ long closure from March to July.

There are the people who never stop working for the care and the rights of people with neurological injuries or conditions.

You can listen to some of them on the website of the An Saol Foundation.

Mags Rodgers is the Executive Director of the Neurological Alliance of Ireland; Ken Duffy is the co-owner of the Little Sport Bike Shop in Dublin who arranged sponsorship for a fundraising cycle; Professor Andreas Bender is the Clinical Director of the Therapieszentrum Burgau (near Munich); Kieran Loughran is the CEO of Headway Ireland.

My person of the year, though, has to be Pádraig who not just inspired all of us in the past but motivates us all to keep going into the future.

Below is one of the most amazing short videos of him in a park near our house. The video is a year or two old and still absolutely amazing. When we were just about to leave, Pádraig showed us what he can do with Dublin City Council’s exercise equipment.

So here is to another year, another decade.

Like Joe, we can see “an outpouring of joy, hope, and renewed faith in tomorrow to bring a better day”. And we will follow Kamala Harris’ mother’s advise. We’re “the first to do many things” and we’ll make sure that we won’t be the last.

A sign of things to come! Let’s just sail and have some fun. Get on board.

Dreamboaters, we’re looking at the stars