Is it fast enough so we can fly away?

Tracey Chapman

The short answer is: it ain’t.

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

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

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

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

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

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

I gave that presentation on the 26th.

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

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

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

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

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

Bob Dylan

Just thinking…

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

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

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

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

That time might (will?) come again.

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

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

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

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

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

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Adults living with disability:

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

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

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

Because we never gave up hope.

Just thinking…

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

George Orwell

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

But there are times when I cannot find an explanation —

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

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

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

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

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

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

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

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

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

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

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

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

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

He was, obviously, right.

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

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

Patton Oswalt, actor and comedian, William & Mary

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

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

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

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

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

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

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

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

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

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

Eddie Vedder, Society

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

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

One song, Society, changed my thinking.

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

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

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

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

We need to turn things on their head at times.

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

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

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

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

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

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

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

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

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

The core of man’s spirit comes from new experiences.

Jon Krakauer, Into the Wild

We didn’t go in a bus but on a boat. In the end, we had decided this was the best way to get to Alaska.

Here are the pictures: from Seattle to Ketchikan (small boat tour), Juneau (tram up the mountain), and Skagway (dog sleighs and gold panning).

The Internet is still pretty bad and getting these pictures up was half a miracle.

I’ll stop writing and let the pictures talk for themselves.

Ketchikan

Juneau

Skagway

We are at sea and on the way back to Seattle from where we’ll leave on Sunday evening to arrive back home on Monday.

This has been so much more than the trip of a life time.

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.

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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.

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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.

We are the champions, my friends, and we’ll keep on fighting till the end.