Jan

It’s not about how much we lost. It’s about how much we have left.
We’re the Avengers.
We gotta finish this. You trust me?

Tony Stark (Iron Man)

In 2015, Jan Frodeno from Cologne/Germany made history, becoming the first triathlete, male or female, to win both the Olympic Triathlon Gold and the Ironman World Championship title. He won the Ironman World Championship again in 2016 and in 2019.

In many of his winning races, he does not produce the race’s fastest split in any portion of the race but he is very solid throughout.

The world is mixed up. So it doesn’t really matter adding to it by mixing up a quote from Iron Man and Avenger Tony Stark with real-life super athlete Jan Frodeno.

What both of them have in common is that they’re always gonna finish what they started.

And this is what they also have in common with the participants of the —

2021 Iron-Month Challenge

While the “official” start date for the Iron-Month Challenge is Saturday, 01 May 2021, we have given some of the participants attending the An Saol Foundation’s NeuroRehab Day Centre a bit of a head start this week.

Pádraig decided to stick with the biathlon version of the Iron-Month this year.

As all athletes, he has his recovery time scheduled in. So yesterday, we went for a long walk. It is the first weekend in Ireland that people can travel beyond the 5k limit anywhere in the county. We decided to go to the reservoir in the Dublin mountains that supplies the city with water, the Bohernabreena Reservoir.

It was a great walk. Blue skies. A fresh, cool breeze. Nearly perfection.

Tomorrow it’ll be back to the Iron-Month Challenge. With a solid performance.

He’s gonna finish it. I trust him more than anyone else.

Because it’s not about how much we’ve lost. It’s about how much we’ve left.

Max

You are a child of the universe no less than the trees and the stars;
you have a right to be here.

Max Ehrmann (1872 – 1945)

But do not distress yourself with dark imaginings.
Many fears are born of fatigue and loneliness.

Max Ehrmann was an American writer, poet, and attorney from Indiana, whose parents had emigrated from Bavaria/German to the U.S.A. His most famous work was Desiderata – something that is needed or wanted.

Desiderata is one poem I read and listened to last week. The other song/poem I listened to is by Baz Luhrmann, Everybody’s Free (to wear Sunscreen, Class of ’99), performed by Quindon Tarver. They are not unsimilar, although one is a bit more lighthearted than the other.

The advice given to the class of ’99 is solid. I promised myself that from now on I will heed it more than I did in the past. I will start wearing sunscreen. I will get more calcium, I will stretch, sing and floss.

Here is another bit I really can relate to:

Don’t worry about the future; or worry, but know that worrying is as
effective as trying to solve an algebra equation by chewing bubblegum
The real troubles in your life are apt to be things that
never crossed your worried mind

The reason I looked at these poems is that there have been some troublesome and difficult situations. They brought me back to the days when I had to explain to media, politicians and representatives of the health system why An Saol needed to establish a rehabilitation day centre for those with a severe Acquired Brain Injury and their families.

A centre where they would find the support they so desperately needed for ‘Life and Living’ with their injuries, in a trusting, transparent and safe environment.

What I found hard to take was the reality that those who have been hit hard and brutally by tragedy are so often talked about and dealt with without them even being aware of those ‘dealings’. That where there should be absolute transparency and trust, because there is a huge vulnerability and dependency on trust, that trust can and is being broken by those who feel they know. By those who are hiding behind forms and General Data Protection legislation instead of walking their talk. While policy papers and strategies point at the rights of patients, of patients being in the driving seat, of the patients’ rights to know, of transparency, open disclosures and access to information held about them – a Kafkaesque-type system is still in place making these papers effectively maculature.

There is a young brain-injured person who was brought for rehabilitation, for six months, to a centre hundreds of kilometres away from their family, more than seven years ago – for his own good, of course. There are brain injured young citizens who have seen their families at months’ long intervals – because of COVID, of course. There are families affected by brain injury who have looked after their loved ones for years, or for decades, who are investigated and their loved ones made wards of court, taking away any say the family might have had, based on the Lunacy Regulation (Ireland) Act 1871 – in their best interest, of course.

I wish they were but not all fears are born of fatigue and loneliness.

I will start wearing sunscreen. I will get more calcium, I will stretch, sing and floss.

I will keep working on Desiderata – something that is needed and wanted. Desperately.

Tomorrow will be a better day.

Easter

“If Easter says anything to us today, it says this:
You can put truth in a grave but it won’t stay there.”

Clarence G. Hall

These days, it seems to be mostly a day of indulging in tons of chocolate, chasing Easter Bunnies, and searching for Easter Eggs.

In my mind, today is the day that gives hope, more than any other day. A day that demonstrates, if that was necessary, that “you can cut all the flowers but you cannot keep spring from coming” (Pablo Neruda). A day that proves that “life never ends and love never dies” (Kate McGahan).

The BBC has an interesting website dedicated to the story of the Passion in which they discuss many aspects of the event, the way it was documented, and its many different themes. They conclude that “the final theme of the passion is victory – the victory of Christ over death – and this is why the Passion story is inseparable from the story of the Resurrection”.

I agree.

For me, the story of the Passion and Resurrection is also a lesson for life. It reminds me that even when injustice is at its worst, when you are at your most vulnerable, people laugh and spit at you, when you are stumbling on your way up to Golgotha, there will always be people who will offer you support, even take that terrible load off your shoulders when you fall. You might not just fall once or twice, you might fall many times. But you will always get back up. Because you know that at the end, of course, there is not death but life. Because love never dies.


A few great and funny things happened during the week.

First there was the good weather changing everybody’s mood. The sun was out again. The sky was blue again. And the temperatures went up.

Have you ever seen a seagull getting a bit of heat by sitting on the roof of a car parked under a great blue sky? It happened right in front of the An Saol building during the week. We all had a great laugh. Why resting on the waves, in the cold Irish Sea, if you can sit on a different Blue: a clean, warm, bright new Ford?

Pádraig tried out an enhanced version of the handshoe mouse we had bought last summer, conceptualised, invented and realised by a really bright, enthusiastic student who has come up with great ideas to support Pádraig’s access to technology.

Pádraig is well able to click the three buttons on the mouse, but he has problems at times leaving his hand on the mouse. So that brilliant inventor student added the handshoe to the handshoe mouse.

He also designed a mouth switch – several switches mounted on a kind of mouth guard or retainer. That was a great idea because Pádraig has no problem moving his tongue thus accessing the switches is easy for him.

Unfortunately, it took Pádraig no time to dismantle the switches. We’ll be working on refinements.


There is a great air of enthusiasm around. Maybe it has to do with the time of the year. Maybe it has to do with Easter. Maybe it has to do with the fact that after night comes day; after winter comes summer; after a fall, you get up and keep going. You can (try to) put truth in a grave but it won’t stay there.

Happy Easter.

Donkey

Donkeys are magic. Not just on Palm Sunday.

Were you ever told that hurt goes away if you say “donkey, donkey, donkey, donkey, donkey,…”?

It’s what we told our kids and it’s what they shared with their friends when they were small. Surprisingly, none of their friends were aware of this magic cure.

Believe it or not – it worked wonders for our kids. A cut on the finger? – “Donkey, donkey, donkey, donkey, donkey,…” And away the pain goes. A bump on the head? A stomach pain? A sore knee after a fall? – The “Donkey” did the trick.

Maybe Jesus knew about the magic donkeys can do when he sent a couple of his disciples to fetch him a donkey for his entry into Jerusalem on Palm Sunday, the beginning of Easter Week, the beginning of the end. And then the new beginning.

The highlight of the past week was Pádraig getting his first vaccine against COVID-19. Nearly everybody around him had long been vaccinated because they were ‘frontline healthcare staff’. Those living in residential care homes had been vaccinated independent of their age. Now the Irish Health Services Executive, HSE, is working their way down the list by age.

Everybody we talked to, and we talked to many people, saw the issue of young, very vulnerable people, living at home, falling between the ‘cracks’ of this system.

Nobody was in a position to do anything. It seems that ‘systems’ cannot be adapted or changed or fixed by individuals applying common sense.

Martin Naughton

Until one person came up with what one of my heroes, Martin Naughton, once described to me as an “Irish solution to an Irish problem”.

Pádraig, like Martin did and many other members of Áiseanna Tacaíochta do, runs his own company to recruit and employ his carers. So he is a the “Manager of Service”, a frontline healthcare worker. Agreed, registered, called, vaccinated.

I am still wondering, why Germans will never come up with such a solution.

I am convinced Pádraig was repeating “Donkey, donkey, donkey, donkey, donkey,…” in his mind last Thursday when he got the vaccine. He made it very clear that while he was all for it, he did not like it and it did hurt. There is nobody I know who had more needle encounters than him. Hurt works by association. I hope that the donkey diversion did the trick.

It all happened during the week we had some great sunshine encouraging the cherry blossom in our garden to really show off against the blue sky. It looks that beautiful every year but for just a very short time. A week or two, maybe three. It’ll just take a night of strong winds to blow the blossoms out of the tree and to make room for the next cycle, green foliage.

In the meantime, we are enjoying this miracle of nature and absolute beauty.

Of course, not all that happened was beautiful. And while I agree with what Edith Eger wrote in her books, i.e. that we should not allow ourselves to remain prisoners of what circumstances or other people throw at us, this can be difficult in practice.

“Here you are! In the sacred present. I can’t heal you—or anyone—but I can celebrate your choice to dismantle the prison in your mind, brick by brick. You can’t change what happened, you can’t change what you did or what was done to you. But you can choose how you live now. My precious, you can choose to be free.” 

Maybe this is what repeating “donkey, donkey, donkey, donkey, donkey,…” does: taking the attention away from the hurt, setting you out on the way to dismantle fear, getting you out of that prison in your mind, and, ultimately, setting you free of what circumstances and others are trying to impose on you.

Jesus had a choice. He went for the donkey.

Will

Are you up for the Challenge?

You can make it happen with an iron-will.

Thanks to a few friends, we are nearly done with the preparations. There is a poster (see above), a website, a GoFundMe site and a few other items ready to go. We have a core group of friends each of whom have committed to get a group of their friends to join and encourage them to spread the word to their friends.

When I shared the idea with someone the other day they said, “it’s called a pyramid scheme“.

I suppose it’s a good thing in this case. Because we want as many people as possible from all over the world to participate and show the world that they are up for the challenge.

I still need two more friends who are ready to take part and who would commit to get (at least) five of their friends to join the challenge. If you’re ready to do that, please let me know. It would be great if we could go truly global!

Look at it as an opportunity to join what’s going to be the most amazing event.

We will set up everything this month and start building up support in April. The challenge itself will run from 01 to 30 of May.


I was looking the other day for information on client-driven service evaluation. And I found this table relating to Case Management in Health Services comparing client-driven and provider-driven models.

I could not believe that this is decades old and seems to describe a well-known models. It describes nearly to perfection the differences between the model we want to follow with An Saol and the model we suffered in the past. No need to re-invent anything. But a need to implement.

Sometimes it’s good to go back to the literature.


We are still trying to identify the best access method for Pádraig to different types of gadgets: for communication, environmental control or just fun. We have tried different manual system and electronic switches connected to different apps and computers. We have even experimented with headsets trying to track electronic signals from his brain.

Over the last few weeks, a brilliant student from UCD introduced me to a revolutionary form of mouth switches. There was a prototype-model he had designed. And there is a highly sophisticated model being designed by a new startup in the US.

The Smart Mouthware device is designed to allow the user to control a computer or a phone with their tongue.

Interestingly, it is often the tongue that patients exiting from   an unresponsive wakefulness syndrome (also still often called a persistent or permanent vegetative state) can first move purposefully.

Another discovery we made was that in many cases people who have very restricted controlled movements, will no longer need to purchase expensive eye trackers but will be able to use apps taking advantage of the highly sophisticated cameras built into the latest released of the iPad Pro and the iPhone. These cameras can track head movements and ‘translate’ them into mouse movements on the screen. In order to ‘click’ they can detect different facial expressions such as sticking out your tongue or blinking with your eye.

Incredible advances are being made in terms of how services are being delivered and how technology can be used to support people with significant disabilities.


It is absolutely brilliant to have the An Saol Rehab Centre in place to connect the research and these phenomenal technological advances with people whose life will be changed by this connection beyond recognition.

An Saol puts the ‘survivors’ into the driving seat. It puts the concept of a person-centred approach as promoted by the HSE into practice: “focus the delivery of services and supports on the person and how they want to live their life”.

It supports the UN Convention on the Rights of Persons with Disabilities (UNCRPD):

      • Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons;
      • Non-discrimination;
      • Full and effective participation and inclusion in society;
      • Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity;
      • Equality of opportunity.
        (from Article 3)

States Parties shall take effective and appropriate measures, including through peer support, to enable persons with disabilities to attain and maintain maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life. To that end, States Parties shall organize, strengthen and extend comprehensive habilitation and rehabilitation services and programmes, particularly in the areas of health, employment, education and social services. (extract Article 26)

We need to do more than advocacy and more than providing traditional provider-driven and clinically-oriented therapy services. We need to change the way they are delivered to make them work long-term, in the community, and supported by a person-centred plan.

As the National Framework for Person-Centred Planning points out wisely it is paramount that —

this plan is put together by a planning team that includes the person for whom the plan is made and who owns the plan; a person to support the owner to put the plan together and into action; the family (if that is wanted); and other people who provide support from time to time, who might be a therapist, a nurse, a psychologist, of a social worker.

We know what needs to be done. The challenge is to make it happen. We will.

Jimmy

“Got your mind set on a dream, you can get it though how hard it may seem.”

Jimmy Cliff

I hadn’t listened to Jimmy Cliff for a while and nearly forgotten about the movie and the album that made him famous: The Harder They Come. The movie and the song are a bit revolutionary from today’s perspective, looking back the nearly fifty years to when it was first published (1972).

Well, they tell me of a pie up in the sky
Waiting for me when I die
But between the day you’re born and when you die
They never seem to hear even your cry

I don’t want to make it more complicated than it is, but, to be honest, I went back to Jimmy’s album looking for another song, Many Rivers to Cross.

Many rivers to cross
And it’s only my will that keeps me alive
I’ve been licked, washed up for years
And I merely survive because of my pride

Much less revolutionary, a bit more sentimental and downtrodden. – Anyways.

Last week was a great week. On Tuesday morning, a journalist and camera man from Nuacht, the Irish-language news programme, came into An Saol and put a news clip together, that was shown the same day on RTE One, Ireland’s main TV Channel, and on TG4, Ireland’s Irish-language TV Channel. – Here is the clip, with subtitles supplied by us.

 

When the clip was done, we learned that Peadar, the presenter, knows Pádraig from way back before the accident. I don’t know why, but it hit a nerve, memory, visions, and produced a deep sadness. There are moments that can hit hard, even when I’m full of energy, positivity, and pride.

And then, a few days later, a therapist working with Pádraig, had the idea to try out something new. Take 1.

 

As you can see, Pádraig responded to the challenge.

And then he showed us that he is up to take on the game. Take 2.

 

I tried it myself and, while I won’t show you the video (I have some pride left), I can tell you that it didn’t go as well for me as it did for Pádraig.

Next Wednesday is St Patrick’s Day, Ireland’s National Holiday.

I will never forget the 2014 St. Patrick’s Day when we decorated Pádraig’s hospital room in Hamburg and turned the ward green. Those were uncertain, threatening times. Nobody knew back then whether Pádraig would ever be able to eat, drink, smell, taste, stand, understand, see, read, communicate, make decisions for himself or be able to get out to meet his friends or watch movies and enjoy concerts, never mind travel, ever again.

How far he has come. He even inspired the An Saol Foundation and its NeuroRehab Day Centre in Santry, now welcoming clients for more than a year – and that in these difficult COVID times.

As most other things these day, the 2021 Festival will be mostly virtual (see the festival’s website).

We’ve got our minds set on a dream,
and we can get it though how hard it may seem.

We still have many rivers to cross. We will. Because we’re Dreamboaters.

Lá Fhéile Pádraig sona duit!

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.