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.
Move on. Right. That’s what I’m going to do. In a few months, I’ll be fine, I’ll just grow a new heart.
Sam Baldwin (Tom Hanks)
I cannot believe it, but here we are.
In Seattle.
Sleepless.
It’s midnight in Dublin and we are about to go out for a walk and have a bite to eat. We’re thinking Lobster Rolls. The kind people brought into Cape Cod Hospital for us when we couldn’t eat a thing.
After a long flight, we now have a day, which is really a night, to recover a bit, before we’ll get onto the boat tomorrow at around lunch time, which will really be dinner time, to bring us up North. It’s all mixed up.
When Pádraig worked on Cape Cod in 2013, he and a friend had planned to go to Alaska, going Into the Wild, following the journey of Christopher McCandless as described first by Jon Krakauer in his book, and then in by Sean Penn in his 2007 movie of the same name.
It’s one of my favourite movies. Then I learned after Pádraig’s accident that it was also one of his.
Pádraig never made it to Alaska. Instead, we were trying to cope as best as we could with our broken hearts, our broken dreams, trying to find hope in what we never accepted as a hopeless situation.
Over these past ten years, I had promised Pádraig and myself that, one day, we were going to go onto that journey. We were going to make happen what didn’t look like very likely to happen. Those broken hearts and those broken dreams were not going to stay broken forever.. They could be fixed.
There were times when it looked like we were going to fail. For all sorts of serious reasons.
When I was planning our journey, I saw it happening over many weeks, slowly, in a bus.
Eventually, we settled for what seemed to be the most sensible way of doing it.
One direct flight. A single base on a ship. Day excursions. All in just over a week.
The flight was tough. Not much room to move. Nine hours are a long time on a plane for anybody. They must have been an eternity for Pádraig. Even getting from the airport to our hotel was a challenge. I don’t think that taxi driver had ever taken four guests, one of them in a pretty big wheelchair, with half a dozen suitcases in one go into his car. We were just tired. He was very nervous.
But we got here. In one piece. And we slept a few hours.
In Seattle. The city where coffee was invented. The city of Frazier. Starbucks, Boeing, and Microsoft. Where people ask you about your day, what you’re up to, and all sorts of other things, when you’re just interested in buying a straight coffee. And they’re so nice about it that you couldn’t really tell them to mind their own bloody business. There is no way you could be bad humoured or impolite in such an environment. And, as we know, even fake laughter has the same (health) effects as the real thing.
This morning, or was it this evening, when we went out for bit to eat, Pádraig was the happiest man under the sun. As content as anybody could be. The real thing.
So were we all. Really happy. Perfectly content.
We haven’t really talked about it. In my head, I couldn’t think of a much bigger thing to happen than making it up the Inside Passage, direction Skagway.
As close as we can make it.
Into the Wild.
Sleepless in Seattle. Eating the Lobster Rolls we couldn’t eat ten years ago because we just could not eat back then with our broken hearts. Now we know that nothing is impossible. We’ll be fine. We’re growing new hearts. And we’re eating, drinking, and enjoying life again.
May the soft drizzle Mayo rain keep the suncream wet! Maith sibh!
A Well-Wisher
The unexpected happened: Mayo, with its ‘soft’ rain, welcomed Pádraig and his friends with the most beautiful skies and a calm, dry day.
Almost ten years after Pádraig’s accident and three years after they had to abandon their plan at a few days’ notice, because of COVID, to fundraise for him by climbing Ireland’s Holy Mountain, they came together and did it.
Three of them barefoot.
Everybody going up that mountain today is a hero.
How the three made it to the top barefoot, though, I cannot fathom. They are super heroes.
We finished the day in Campbell’s with a few drinks, lovely food, superb music, and the best company you could wish for.
A fantastic day Pádraig will never forget.
A day made possible only by the friendship of a very special group of people.
Thank you! – And also a big ‘thank you’ to all who have supported their fundraising efforts, here in Ireland and abroad!
We all slept well last night after an unforgettable day!
We are the champions, my friends and we’ll keep on fighting till the end. No time for losers ’cause we are the champions of the World.
Freddie Mercury
There are weeks you will never forget.
For me, last week was one of them.
Against all odds, I finished the Hamburg marathon (thank God for keeping hills out of that city), Pádraig’s friends are preparing their climb of Croagh Patrick after a three year delay because of COVID, and Pádraig played an important role in the commencement of a historic piece of legislation.
Let’s get to the last event first.
The first of the The Irish Times Images of the day last Wednesday, 26 April 2023, was a picture of the people championing the 2015 Assisted Decision Making (Capacity) Act being commenced that day. RTÉ’s Social Affairs Correspondent published an article, featuring Pádraig and other Champions.
It was a truly historic day and it had taken eight years after it had been approved by the Irish Parliament, the Dail, and signed by the President of Ireland, Uachtarán na hÉireann, to finally replace, or repeal, the Marriage of Lunatics Act 1811 and the Lunacy Regulation (Ireland) Act 1871.
Pádraig has been playing an important role in the promotion of the Act and the Decision Support Services (DSS), tasked with the promotion of the rights and interests of people who may need support with decision-making. They register decision support arrangements and supervise decision supporters.
He will be taking part in a publicity campaign, that will be seen by 90% of the people in Ireland. His voice will be heard on radio and TV advertisements, and in printed publications – in English and, of course, as Gaeilge. The day the act came into operation, he and his sister featured on all the TV news of RTÉ One.
Pádraig joined the other Champions, members of the DSS, the Taoiseach, and several Ministers, at a red carpet event in Smithfield’s Light House Cinema on Tuesday afternoon and at Government Buildings on Wednesday Morning.
Cruach Phádraig do Phádraig
Please join us
Saturday, 06 May 2023, 11am
Croagh Patrick
One of Pádraig’s best friends has been working on the big climb for Pádraig for the past weeks, supported by many others. He wrote:
The time has come. Seo muid réidh!
10 years on from Pádraig’s accident and 3 years on from the original planned date, We will finally be completing the hike up Croagh Patrick in aid of Pádraig on Saturday 06 May!
Everyone is welcome to come along. If you previously planned on doing the hike or if you’ve a new friend / partner that would like to come along too. The more the merrier!
The plan is just like before – We will hike at 11am on Saturday 06 May. A mini-bus/lifts will take people from Westport town out to the foot of the mountain and back after the post-hike music and pints session in Campbells, with Pádraig and family!
If you plan on doing the hike, please fill in this form as soon as possible so as to help with our planning. Similarly, if you want to bring a new friend / partner etc. this time, please forward them this form and get them to fill it in too. If you are not free to do the hike, simply ignore the form.
We will be doing a fundraising drive in the immediate run-up and during the event itself. If you want to set up a new page / if you have a friend that is now going to do the hike, you or they can easily set up an individual page that will feed into the main event’s pot by clicking on this link and clicking on the orange “start fundraising” button. Pádraig’s needs and expenses are as urgent as ever, so every cent is a great help.
Grá Mór agus Beirígí bua!
It is not too late to join more than 20 of Pádraig’s friends who so far have said they’ll be there. You won’t find a place more beautiful than the top of Croagh Patrick in spring and no better company to climb the mountain than Pádraig’s friends.
Pádraig will be joining his friends for post-hike music and pints session in Campbells.
Hamburg Marathon
Against all odds, I did finish the Marathon last Sunday.
There was an unbelievable buzz in the morning, getting on the underground, getting out of the underground and to the starting line was magic.
That magic disappeared for me around kilometre 30.
I had decided that I was going to finish without dying in the process.
Someone said to me that there is so much more fun with the slow runners than with the fast ones. And he was right.
I overheard a conversation between a German group where one lad said to a friend: “I mean, why would you finish in three hours if you have paid for six?” – Really, why would you?
There were many people along the route encouraging the runners who all had their names on their racing number. They had even told their kids what to do: call out the name of the runner and tell them that they’re looking great and should keep going. I don’t know how many kids shouted at me: Reinhard! Du siehst gut aus! Weiter so!
Even when I wasn’t running, but walking and trying to save my strength, or what was left of it, for the final effort, the Endspurt, on the red carpet. I felt like stopping and telling the kids: Hey, I know that I look pretty miserable and, to be honest, I would really prefer to run, not to continue going as slow as I am at the moment! I didn’t stop and, instead, smiled and waved at them as I passed.
My finishing time was my worst time ever, around 5:30hrs. But it was a finishing time. More than I had expected.
It was my first marathon in five years and, hopefully, not my last.
Now I know that I can do it. If I try a bit harder and prepare a bit better, I might even be able to do one with a few hills.
You’re running on guts. On fumes. Your muscles twitch. You throw up. You’re delirious. But you keeprunning because there’s no way out of this hell you’re in because there’s no way you’re not crossing the finish line. It’s a misery that non-runners don’t understand. Martine Costello, journalist and content strategist
I arrived in Hamburg yesterday, on my own, back to the city where we spent the best part of two years, following Pádraig’s accident. As if that didn’t feel strange enough, I am here to run the Hamburg Marathon today. This is not the first time I’ll be doing it. There was a year, when a few of Pádraig’s friends and I did it together.
But it is the first time in five years – and I am not getting any younger. Or wiser, you might add.
The thing is: I just want to cross the finishing line. I don’t care so much about the time it’ll take me to do it. I’ll do it like a leisurely Sunday morning run. And I’ll try my best not to throw up.
To be honest, I didn’t want to talk about it until it was over.
But there you are.
At a minimum I will have a tale to tell next week.
It took many years for Pádraig to meet a German neurologist, by chance: he was visiting An Saol. He suggested to get so called “Ptosis Eye Crutches” to support his eyelids and facilitate the opening of his eyes which has been difficult from him because of damage to the 3rd nerve, as a result of his accident.
Last week the new glasses (just clear glass) with the all important “crutches” were delivered and fitted. Pádraig and all of us will have to get used to them, to put them on and position them correctly. We have already noted what a huge difference these glasses make to Pádraig and his connection with and participation in the world around him.
While he has been able to open his eyes, it required such a big effort that, using his resources wisely, he only opened his eyes for very good reasons. Now, he will be able to see even the most ordinary things without having to make a big effort.
This is another small but significant step towards normality: participation, equality, and inclusion.
I will be thinking of all these small but important steps today when I will try to cover a long distance – and when with 100% certainty the thought will cross my mind: Why on earth am I doing this?
Because we will continue to take one step at a time, and never give up.
There’s no way out of this because there’s no way we won’t be crossing the finish line.
After all: there is always a bit of fun, humour, and laughter – even in this misery that non-runners don’t understand.
If you have everything under control, you’re not moving fast enough.
Mario Andretti
Mario Gabriele Andretti is an Italian-born American former racing driver, one of the most successful drivers in the history of motorsports, He is one of only three drivers to have ever won races in Formula One, IndyCar, the World Sportscar Championship, and NASCAR.
We were moving fast like Mario last week. And it seemed we had no control. In a beautiful way.
When we talked about what we had enjoyed best during out trip, we decided to leave out the obvious: a dreamlike meal in a fabulous San Sebastián restaurant.
I had read about those tasting meals with courses consisting of just one or a few bites each with food with its tastes and textures just exploding in your mouth.
Last week, we had one of those meals where the first course arrived in the form of a little tree with its “fruits” offering the most amazing tasting experiences. And that was just the start.
That didn’t prevent Pádraig from having another go at his favourite Spanish dish: Pulpo a la Gallega.
We seemed to have been on the go all week. Day and Night. On the Sea, even in the Sea. On Foot. And driving.
It’s hard to pick a favourite amongst the trips. Some were very long, like the crossing back to Ireland. Some were very short, like the dip into the Atlantic. Some were adventurous, like the night out on the town. Some were elegant like the surroundings of the fabulous places we stayed at.
If in Bilbao, you do as all the tourists do: you visit the Guggenheim.
As museums go, it’s definitely not middle of the road. The paintings and the walk-in sculptures are pieces of art you’d be hard pressed to find anywhere else.
There wasn’t an hour of therapy last week. But it was definitely life in the fast lane which at times was completely and beautifully out of control.
We didn’t know what the days were going to bring. Each one was an adventure and lead to new discoveries and experiences.
Pádraig tremendously enjoyed the time out, the change to the normal routine, a taste of the life of others.
It was brilliant. We were moving fast and didn’t have everything under control all of the time.
This was Life and Living to the fullest extend possible. As it should be.
Your time is limited, so don’t waste it living someone else’s life. Don’t be trapped by dogma – which is living with the results of other people’s thinking.
Steve Jobs
The Crossing and Arrival in Santander
Tom Sweeney’s recent report in the Independent on the new ferry Salamanca sailing directly from Rosslare to Bilbao started like this:
“Welcome to my local”, says lorry driver Mick, from Limerick, who’s clinging to the bar with one hand and to a pint of Murphy’s with the other.
I can see Mick’s point – even though our experience was slightly different.
It’s a long 30-hour crossing but it has the advantage that there are no long drives involved if you just want to explore Northwestern Spain. This was Pádraig’s second trip on that route in a row and the decision by Brittany Ferries to replace the old ship with the new Salamanca certainly made a huge difference.
It is, of course, Easter Week, Semana Santa, with processions everywhere is Spain, some lasting up to 20 hours, based on traditions that are several hundred years old.
We had a hotel booked in Santander, right beside the sea. One reason to go to Spain at Easter is that you get good weather with a bit of luck. This year, the skies have been blue, without a cloud in sight, with a bit of wind to cool down the temperatures.
Pádraig, as us, very much enjoys the Spanish food. And the walks along the sea front.
Torrelavega
Torrelavega turned out to be a huge part of our trip to Spain. Considering that Pádraig was there for just 4 mornings of about 2 hours each, the work he and the therapists did there was pretty impressive. There was everything: pushing, pulling, stretching, weight lifting.
When the therapists started to go easy with no or very light weights, he demonstrated to them what he could do. He pulled up to 9 kilos, not just once or twice but around up to 10 times in a row. Try that yourself and you’ll quickly find out that this is quite a challenge.
We have moved to San Sebastián for the second leg of Pádraig’s Spanish tour and will stay here for a few nights before moving on to Bilbao where we’ll spend another two nights and then get the “cruise” back to Rosslare.
There are moments when you realise how lucky you are.
The last days had a few of them for Pádraig and for all of us. The dogma, in the person of a consultant, said that Pádraig would have an intolerable life. And made unthinkable suggestions.
We know that our time is limited, so we won’t waste it living someone else’s life. We won’t be trapped by dogma – we won’t be living with the results of other people’s thinking.
Do not follow where the path may lead. Go instead where there is no path and leave a trail.
Ralph Waldo Emerson
We’re off to Bilbao, Santander, and San Sebastián tonight and will spend two night at sea. At the moment, we are waiting for boarding to start.
We are looking forward to the good weather, walks along the sea, and Spain’s brilliant food. Travel for someone like Pádraig is not a given. Staying overnight on a ferry, arriving in hotels with ‘normal’ beds and bathrooms. It requires us to be fit and Pádraig to trust us that it will all work out.
I will tell you about the trip over the next week or two.
But in the meantime, Pádraig continued to trailblazer, even without travel. Where he is going, every day, he is leaving a path.
Last week, Ailbhe Conneely. RTÈ’s Social Affairs & Religion Correspondent, interviewed Pádraig and his sister about the new Assisted Decision Making (Capacity) Act, about to be commenced at the end of April. Finally. It was signed into law by the President, Michael D. Higgins, in 2015. Why it has been taken eight years for it to be commenced and why people had to continue to suffer under the old, 170 year-old legislation is anybody’s guess.
Also last week, Ireland lost against France. Just 1:0. For me, and most spectators in the stadium, it actually was a win. Even Griezman with his outstanding skills and pink hair, did not manage to bring the Irish team’s spirits down. From beginning to the end, it was high-octane. And there was a moment when Ireland nearly scored.
Lastly, the past week was also the first time the IBIA Congress assembled in Dublin. Too expensive for most to attend, but we had some of the distinguished speakers from the Congress visiting the An Saol Foundation Centre, among them our good friend Prof Jörg Wissel.
A great week when a lot happened.
There is more to come. The Spanish coast will soon be in sight!
Pádraig has never followed where the path may lead him. Instead, he always went where there is no path and he left a trail.
The definition of genius is taking the complex and making it simple.
Albert Einstein
When people talk about brain health, things often get complicated – I think that they really aren’t. To prove my point, I made a little experiment and asked some simple questions. Have a look at them and the answers I got.
How to look after your brain?
In one sentence: engage in healthy habits such as regular exercise, a balanced diet, getting enough sleep, and staying mentally and socially active.
What if you find it difficult to do this?
In one sentence: Making significant lifestyle changes can be challenging, but starting small and building up gradually can help make it more manageable, and seeking support from friends, family, or a healthcare professional can also be helpful in achieving your goals.
How long will it take to make these lifestyle changes?
The amount of time it takes to make lifestyle changes to improve brain health can vary depending on the individual and their current habits. It may take several weeks or months to establish new habits and see significant improvements in brain health, but the benefits can be long-lasting and can help reduce the risk of cognitive decline and other health issues. It is important to remember that making lifestyle changes is a process, and it is okay to take it one step at a time. It is essential to make changes that are sustainable in the long-term and to be patient and persistent in maintaining them.
Easy peasy.
Here is where I need to make a confession, well: really two.
Confession #1: You will have heard about those artificial intelligence (AI – whatever that is) programmes that generate text for you. So I tried Open AI’s ChatGPT to get the answers to my questions.
Confession #2: I had to look up how to spell “peasy” as in “easy peasy” and when I did I came across Easy-Peasy.ai – which is another AI programme. This one doesn’t just answer simple questions, it writes entire documents for you based on your specification. “Easy-Peasy.AI is the AI Content Generator that helps you and your team break through creative blocks to create amazing, original content 10X faster.”
So I asked it to write a short, enthusiastic blog entry on how to support Pádraig Schaler who suffered a sABI while, at the same time, also trying to support other families in a similar situation.
You can stop right here – or read through Easy-Peasy’s “enthusiastic” blog post. Ok, he was not eight years old when he had his accident and he did not break his arm and his leg – but he is “leading the way” and “through his fight for himself and others with sABI, Pádraig is demonstrating that we can make a difference when we work together.”
There are a few inaccuracies and repetitions in the text the programme generated (below) which you would correct if you wanted to publish it, but it certainly isn’t a bad start.
This is so simple and it is “free”. The only information you have to give to sign up to this service is your email address which needs to be confirmed, and off you go!
I find it a bit spooky. What’s next?
Join the Fight for Pádraig and All sABI Survivors: Let’s Make a Difference Together!
When it comes to advocating for survivors of severe acquired brain injury (sABI), Pádraig Schaler is leading the way. Pádraig is an inspirational figure for people around the world who are living with sABI or supporting someone who is. His story is a powerful reminder of the importance of raising awareness and asking for support for sABI survivors. Through his fight for himself and others with sABI, Pádraig is demonstrating that we can make a difference when we work together.
Introduction
Pádraig, who is from Ireland, experienced severe brain injury when he was eight years old. He sustained multiple skull fractures, a broken arm and leg, and a traumatic brain injury. Since then, Pádraig has been fighting to survive and to ensure that he, and all sABI survivors, receive the help and support they need to lead full and happy lives.
The importance of raising awareness and advocating for sABI survivors cannot be overstated. Even with advances in medical technology, sABI remains a tragedy that too many people and families are facing. There are still many unanswered questions and inadequate support systems in place to address the unique challenges faced by sABI survivors and their families. In order to create the systemic change that is so desperately needed, it is essential that we join forces and make a difference together.
Understanding sABI
sABI is an umbrella term that is used to describe a range of acquired brain injuries that can include a traumatic brain injury (TBI), an anoxic brain injury (ABI), or a stroke. Most sABI survivors experience a range of physical, cognitive, and emotional difficulties, as well as the disruption of their daily lives. The cause of sABI can be either traumatic, such as a car accident or a fall, or non-traumatic, such as a stroke or an anoxic event.
sABI survivors often face a range of hurdles and difficulties on their journeys to recovery. Depending on the severity of the brain injury, sABI survivors may experience physical, cognitive, and psychological changes, which can have an impact on their ability to focus and interact with the world around them. In addition, sABI survivors, as well as their families, often face financial and emotional challenges, as well as limited access to resources and support.
Advocating for Pádraig and sABI survivors
Advocacy and awareness-raising are essential elements of making a difference for sABI survivors, and Pádraig is leading the way. Through his work with the sABI Support Network, Pádraig is advocating for improved access to resources, greater understanding of sABI, and improved supports for sABI survivors and their families.
There are many ways to get involved in the fight for sABI survivors. From attending awareness events and donating to sABI charities, to writing letters to local representatives and sharing stories of sABI survivors on social media, there are many ways to take action and make a difference. In addition, there are many ways to support Pádraig and his family’s campaigns and initiatives, such as by donating to the sABI Support Network or participating in fundraising events.
Making a difference together
Collective action is essential in creating change and making a difference for sABI survivors. By joining forces with other organizations, communities, and individuals, we can amplify our voices and make a bigger impact. There are many ways to collaborate with others to support sABI survivors, such as through advocacy coalitions, fundraising events, and research initiatives.
Conclusion
Advocating for sABI survivors is a critical endeavor, and Pádraig is leading the way. By joining forces and making a difference together, we can create systemic change and improved access to resources and supports for sABI survivors and their families. Let’s join the fight and make a difference together!
Hospi-Tales 