This could be para-, para-, paradise
Coldplay

When we were walking up to Croke Park with more than 82,000 other Coldplay fans we knew this was going to be a special concert.

We had now idea what was going to hit us.

Perhaps the ‘armbands’ and the 3D glasses everybody got when they were entering the stadium could have been a give-away.

Pádraig had a good seat on the accessible platform with his sister. We sat across from him and were ready to enjoy the evening with some friends.

It turned out to be so much more than a concert. It was like a movie production, with different actors, not at least the audience, and credits at the end of the event on two giant screens.

The songs were magic. The performance brilliant. The production breath-taking.

Life goes on, it gets so heavy
The wheel breaks the butterfly
Every tear, a waterfall
In the night, the stormy night, she’d close her eyes
In the night, the stormy night, away she’d fly

There are echoes of Oscar Wilde in the lyrics of songs like “Sky full of Stars” or “Paradise”

So lying underneath those stormy skies
We said, “Oh, oh-oh-oh-oh, I know the sun must set to rise”

I believe this could be para-, para-, paradise.

We can get it if we really want. But we must try. Try and try. Try and try.

We need to kind of refresh our fear in order to refresh our understanding of how a safe place works.
Andrew Pyper

What Is your safe place?

You might feel physically safe, not threatened, in a public space, during the day, with lots of people around. You might feel emotionally safe, when you are with family and friends, people with whom you ca be open without the fear of someone taking advantage of any weaknesses you might show or admit to.

Last weekend, one of the big support bars underneath Pádraig’s wheelchair broke. Neither us, nor anybody we talked to, had ever heard of anything like it happening.

I went to a hardware shop, bought a steel pipe and did my best to attach it to the broken bar. We immediately notified the community occupational therapist (OT) who notified the company the HSE has under contract to look after the maintenance of wheelchairs.

We were talking to them all week long. Their engineer suggested to weld the bar back together, insert a pipe into the broken pipe, get another base for the wheelchair – nothing materialised. On Thursday, the OT was still waiting for a report from the engineer – when even to a non-professional eye it was glaringly clear that this wheelchair was a write-off.

Nothing happened for the week. No parts were repaired, no parts were ordered. When the OT stated on Thursday that it wouldn’t be safe for Pádraig to use the chair, we asked here what he was supposed to do then? She answered that the only safe place for him would be in bed.

The only safe place for him is in bed.

Repeat that a few times and let it sink in. Consider: this is coming from an Occupational Therapist. Consider that, according to the supplier’s rep, the timeframe for getting a replacement is as long as a string. Could be four weeks, could be four months.

It seems to me that the only correct action for me might be to work with a wheelchair manufacturer that can supply a chair suitable for Pádraig’s height, make an appointment with them, together with an OT, and get one made up there and then. Whether that is in Germany, Denmark, or Norway – or anywhere else. Unless, of course, Pádraig gets a replacement chair pronto.

Staying in bed for months is not an option. A bed is not a safe place for Pádraig to live in.

If the HSE does not understand that, and don’t find Pádraig a new chair very soon, they will have to pay the bill when it is presented to them. I am sure that there are mechanisms to help them come to grips with this lesson if needed.

Staying in bed for weeks and months make you sick and weak.

People die in bed.

Pádraig would rather live.

The first question which the priest and the Levite asked was: ‘If I stop to help this man, what will happen to me?’ But… the good Samaritan reversed the question: ‘If I do not stop to help this man, what will happen to him?’
Martin Luther King, Jr.

The priest and the Levite remind me of the public servant bureaucrats dominating many areas of our lives in those save, well-paid, pensionable, and super-secure jobs for life. Taking a decision, any decision, could cause them trouble. They are better off avoiding decision making. They ask themselves what could happen to them if they did something, perhaps something to push the boundaries a little, to introduce change where change is needed?

Whereas many of us believe that we need to do something to help where help is so badly needed.

Don’t stop. Just go.

Pádraig had a really nice evening in Egan’s Pub, an Irish pub serving the visitors of a golf course just a kilometre or two out of Tating, in the middle of Eiderstedt’s gorgeous countryside. They serve Guinness and Fritz-Kola (Hamburg’s answer to the famous American softdrink), and have and old-fashioned LOVE sign made from palettes on their grounds.

His car could just about handle the volume and weight of our luggage. We stopped over for a night in a country hotel and had a lovely dinner with family living close by. We didn’t need the ‘smokers’ table’ to meet, smoke, and talk – just some nice food and drinks. Rotterdam harbour has aspects of a fortress with high fences and a distinct police presence.

We had a table booked on board for a relaxed dinner which we finished early enough to experience the ferry leaving Rotterdam’s dystopian harbour. There is a distinct difference in the low level beds and Pádraig’s tall wheelchair which every year causes us less issues with the transfer as Pádraig and I are getting better collaborating on this short but complex transfer from wheelchair to bed and vice versa.

When Dublin came in sight and we disembarked, we soon got a taste of what the celebrations in Sheriff Street for Irish gold medal winner Kellie Harrington just a few days prior to our arrival must have felt like.

Pádraig started straight back in An Saol with a brilliant sitting and positioning session, supported via video conference by F.O.T.T. doyen Kay Coombes; a great hour with the UCD-based PhD student building highly innovative and creative switch access devices, connecting them to synthesisers; and his regular exercises with the brilliant staff at the An Saol Centre.

The prototypes of the special access devices use off-the shelf material originally meant for completely different purposes and include cut-off swimming noodles and musical trainer devices.

There are moments, when I have tried, tried again, and tried a third time – without success.

There are moments when people seem to be blind, deaf, and dumb.

When I hit my head against a wall; when I feel the pain and the hurt but keep going; when people look at me and surely wonder whether I’m a bit mad and even unreasonable.

When stopping seems to be the only, the obvious, and the sensible choice.

But think about it for a moment:

What would it mean for Pádraig and for others like him if I, if we, stopped?

What would become of my, of our, lives if we did?

“You have to believe in yourself when no one else does — that makes you a winner right there.”
Venus Williams

We were sitting at the fountain in the gardens of the Schön-Klinik last week. Venus wasn’t there, but we were with Pádraig and one of his best friends. About 10 years ago, it took serious persuasive efforts to get the doctors give Pádraig permission to leave his room, leave the hospital, and get some fresh air, hear some different sounds and noises, feel the air on his skin, feel alive. – They told us they “didn’t want any dead bodies in their yard”, keine Toten auf dem Hof. The audacity, gall, nerve, and temerity.

Being at this fountain after months of having practically being locked into his room was one of those moments when we realised how much Pádraig believed in himself. That he was a winner. No one in the hospital had any great hopes for him. That he could get a job promoting new legislation in Ireland and inspire the establishment of a Centre for Life and Living with a severe Acquired Brain Injury. A Centre the world had not seen before.

We went for walks. Revisited some unique German ‘icons’ like the Litfaß-Säule with announcements of concerts and exhibitions. Saw a very unusual ‘camper’ with the tent on its roof.

We had dinner and drinks at Gosch in St. Peter-Ording on the edge of the Wattenmeer where the sky meets the sea and the horizons are never-ending.

The highlight of the week, however, must have been a visit to Tonndorfer Hauptstraße in Hamburg, Pádraig’s and our first joint apartment, up on top of the white tower, with a huge terrace and round walls, and a view over the city of Hamburg that would be hard to match.

We went back to the supermarket where Pádraig went shopping for the first time after having been discharged from hospital.. We remembered what a great deal that was and I remembered how uncomfortable I felt at the time – and not just because I wasn’t great at pushing his big wheelchair down through narrow aisles.

Haus 2 of the Schön-Klinik had not changed much, apart from looking a bit older and the white paint not being as white as it was when we arrived there 11 years ago.

Even the small exhibition telling the story of the Schön-Klinik during the first half of the last century was still there. People who did not fit into society, including ‘difficult’ and ‘nervous’ women, were being looked after and treated there. During the horrific time of the nazi regime, they were seen as an unnecessary burden on society. Untreatable and not more than a drain on tax payers’ money.

I couldn’t help but hearing echoes in my mind of remarks being made again and again over the past decade. We still need significant change. Pádraig’s work most definitely is not finished.

One of Pádraig’s sister and her partner had a spare ticket to yesterday’s rowing finals at the Olympic Games in Paris. That’s why I saw the unbelievable Oliver Zeitler win his first Gold Medal in single sculls. The atmosphere was electric.

I only spend one night in Paris. Enough to see the Olympic Flame, Notre-Dame being re-build, the spectators’ installations on the Seine, and enough to have one of my favourite dishes: steak tartare. Where else but in Paris would you get raw meet topped with a raw egg in a restaurant? I topped that up with half a dozen escargot – another French speciality.

It’s hard even to remember all the things that happened during the past week.

Long lost memories came back. Tonndorf. The Schön-Klinik. Panic stations we thought would last forever.

They didn’t.

Life is tough. I am reminded of that every day. There is pain inside that badly hurts and will never go away. Sometimes it gets to the surface and paralyses. Sometimes it resides and blends into to my every day life.

But life is also beautiful in the company of family and friends.

Pádraig could most likely have made it to the Olympics as a swimmer. Although he decided not to pursue that goal, in my mind he is a true Olympian.

What Pádraig is teaching me is that believe in yourself is most important, especially when no one else does — and that this makes you a winner right there.

He doesn’t need a gold medal to proof it.

They say that what is right is wrong and what is wrong is right; that black is white and white is black; bitter is sweet and sweet is bitter.
Isaiah 5:20

Isaiah, in the 8th century BC, described 21st century politics. How did he do this?

He was a prophet, after all, but being able to predict what the world will look like more than 2,500 years later is a big deal. Even for a prophet. Unless, of course, some things never change. Like: turning the truth around, creating an alternative world, to suit you.

Needless to say, like most prophets, Isaiah died young and violently. He ended up, being sawn into half, most likely with a wooden saw, on the orders of his King.

Over the past 11 years, we have been told that death is life, that withdrawal of service is providing it, and that perverting justice was administrating it. I should not have been surprised last week to see what amounted to one of the world’s largest stages, to be handed over to a man who shouted out insults and lies in an uncontrolled rage.

The Prime Minister of Israel addressed the Congress in Washington. If you missed it, you can watch it on Youtube and read CNN’s Fact Check.

He quotes the Bible to back up his arguments. If you’re not into that kind of thing, you can skip the next paragraph which basically says that the Lord’s anger about his people who pervert justice will smash them.

Woe to those who are wise and shrewd in their own eyes! ²² Woe to those who are “heroes” when it comes to drinking and boast about the liquor they can hold. ²³ They take bribes to pervert justice, letting the wicked go free and putting innocent men in jail. ²⁴ Therefore God will deal with them and burn them. They will disappear like straw on fire. Their roots will rot and their flowers wither, for they have thrown away the laws of God and despised the word of the Holy One of Israel. ²⁵ That is why the anger of the Lord is hot against his people; that is why he has reached out his hand to smash them. The hills will tremble, and the rotting bodies of his people will be thrown as refuse in the streets. But even so, his anger is not ended; his hand is heavy on them still.

If I was the Prime Minister, I’d watch my back.

---

We continue on our Road, to the Lighthouse, the Sea, and excellent food. Empty beaches. A couple pulling their dog to the sea in a little trolley. The old Shipyard. The hobby photographer with the biggest telephoto lens money can buy. Tönning, Garding, the Arche Noah, Westerhever. Currywurst, Krabben, Speigeleier, Bratkartoffeln, Aal, Labskaus.

We continued with our exercise programme.

Without rush, timetable, or stress.

Trying out new ways of keeping fit and in shape.

New ways of communication.

Watching the “reunion of the peacemakers” on CNN.

In my mind, what is right is right and what is wrong is wrong; colours are what they are; and what is bitter remains bitter.

Roll out those lazy, hazy, crazy days of summer.
Nat King Cole

I find summer hard to deal with. Heat reminds me of the few weeks we spent in Cape Cod eleven years ago. Cycling and cyclists make me feel uneasy. The innocence of babies and kids playing on the beach only makes me think that soon they will be learning about how hard life can be. Happy Days and Sunshine don’t rhyme anymore.

Yet, there are moments when we are on a walk in one of the small towns, sitting in the garden, or admire the vastness of the Wattenmeer, Germany’s most Northern National Park, that life feels ok, manageable, without fears or threats.

The local park brings beauty to life but also, of course, memories. I realised that I’ve been spending a lot of time here on Germany’s Northwestern coast for the past 50 years. And there are still parts I don’t remembers to have seen before, like that monument asking us to honour those who died and went missing between 1914/1918 and 1939/1945. It feels strange to see such a monument, especially on yesterday’s 80th anniversary of the failed attempt by German soldiers to kill Hitler – Germany’s most famous act of resistance to the Nazis.

In between walks, Pádraig has time to exercise.

It’s when I have a bit of distance, time away from the normal busi-ness of every-day life, that I wonder why we are here? What it is that makes our life meaningful? Because, when I look at those around us on holidays, it seems that their purpose in life is to drive big expensive cars, eat humongous meals in expensive restaurants, wear the latest designer clothes, walk their designer dogs, and to travel in great style as much as humanly possible.

I struggle with that.

Last week, I found this interesting answer to the most important questions of them all on Reddit.

Existence precedes essence. You exist before having any concept of who you are. You become who you are by making decisions, choices, and actions. Because we have no given purpose, we have to give one to ourselves. You decide what you value and what your passions are, that becomes the purpose of your life. The meaning of life is to be alive. The purpose of life is whatever you make of it. Because it is yours, and only you can make your decisions.

I find it interesting because it works for all of us.

There are people who said to me that it doesn’t make sense to live an intolerable life with a severe brain injury. That our family would break up and be destroyed if Pádraig lived with us. That any “resources” he needed could be better spent on those who would recover.

Pádraig’s meaning of life is to be alive. The purpose of his life is to show that he is alive, as happy as any of us, if not more. He made that decision when he decided to live and not to die, on several occasions over the past 11 years.

We don’t have a relaxing, lazy, hazy holiday in the sun. But there is an element of healthy craziness. Every day is hard work. But every day brings fulfilment and happiness.

We’ll be looking back at this summer and feel lucky that we were alive and kicking. Because we are the masters of our fate, the captains of our soul. When the going gets tough, the tough get going. With feeling, heart, and purpose. And fun.

“Besides the noble art of getting things done, there is the noble art of leaving things undone. The wisdom of life consists in the elimination of non-essentials.”
Lin Yutang, The Importance of Living

Two ferries, two nights, and a thousand miles got us to Tating.

I have the feeling that I left behind millions of things undone.

I took with me, of course, a big bag of stuff, like papers and letters and stuff like that. On the way, we stopped beside the motorway so I could join the weekly Teams call we have with the Teach An Saol planning team.

Some say that it was Saint Bernard who said, a long time ago, that the road to hell is paved with good intentions.

Could it be then that the elimination of non-essentials, the noble art of leaving things undone, this wisdom of life, might keep you out of hell?

Should I try it?

The only way to make sense out of change is to plunge into it, move with it, and join the dance. 
Alan Watts

After a long break, Pádraig had another session with the UCD PhD student using switches to play music. This time, they were trying off-the-shelve switches – although the Handscupe with the appropriate attachments was there too.

Most times, switches are used in a binary way. You press and release them to switch something on or off, perhaps to start or finish a process or an action.

Last Thursday, they were using an analog switch which had several effects. Some were obvious. Some really surprised me. All presented Pádraig with different challenges.

And for Pádraig, challenges are fun. The more, and the more interesting and diverse, the better. Pádraig also likes music. All this made for a great morning session.

I tried to capture some of the action.

Setting off a violin and then a cello, varying the speed by applying more or less pressure to the switch. This wasn’t easy: Pádraig had to hold the switch in the right way that would allow him to press harder and softer. He managed really well and the sound effects were brilliant.

The next challenge was less obvious: pressing the switch, more or less, varied the pitch of a sound. The challenge was to match that pitch with another playing in the background. This was so much more than ‘just’ an exercise in dexterity. It was an auditory and great mental challenge. I am not an expert but could come up with a long list of senses, processes, and decision-making that this exercise addressed.

Yesterday morning, I went for a walk in the park. The privilege to be able to go out and enjoy such beauty. The path ahead made me think of where we’re heading.

The river showed me how calm waters can turn into turbulences if the stream hits a few obstacles it has to navigate. The river as a metaphor for life? Is that too philosophical?

Should I plunge into it, move with it, and join the movement?

You can’t go back and change the beginning. But you can start where you are and change the ending.
C.S. Lewis (and others)

When Mark Couto, a local plumber, left his house on 103 Lake Shore Dr, Brewster, MA 02631, USA, the morning of 27 June 2013, he drove towards Brewster, passed the local Brewster Police Station and turned right onto Route 6A, also known as Old King’s Highway, one of America’s most iconic byways which comprises the largest contiguous historic district in the United States.

According to the police report, “the 23-year-old was riding his bike near the Bramble Inn at 10 a.m. on June 27, 2013, when he turned in front of a van driven by Mark Couto, 52, of Brewster. Both driver and cyclist were headed east on Route 6A when Schaler turned left in front of the vehicle without warning as Couto was trying to pass him. The report stated that Schaler was not wearing a helmet.”

Seriously?

They blame the victim not just for the accident. They also blame him for the seriousness of his injuries. No bicycle helmet protects your head when you are hit at 80 km/h.

Watch the video above taken at the site of the accident and make up your own mind. Even without knowing the details, the police report, published within hours after the accident when no (thorough) investigation could have taken place, seems to be misleading at best. While Pádraig’s phone and bicycle were taken into ‘custody’, Mr Couto was not tested for substances, his phone not looked at, and the car driven by him was taken to his garage the same day. The Chief of Police told me that they had decided not to, wait!, prosecute Pádraig. No other prosecution took place.

The District Attorney of Massachusetts later considered a criminal investigation against the Brewster Police Department but a lengthy investigation concluded that there was not enough evidence for this.

Following a visit to the site of the accident, the assessment of an independent accident investigator we had to pay for, and sworn statements made by the driver and others involved taken by a lawyer we also had to pay for, I strongly believe that Mr Couto attempted to overtake Pádraig when another car turned right onto Route 6A coming out of a lane ahead of him. When suddenly confronted with an oncoming car at a relatively short distance, Mr Couto did not watch Pádraig anymore but concentrated on avoiding the oncoming car. He failed to keep the lawful distance and clipped the handle bar of Pádraig’s bicycle.

His head hit the C-Bar and the windscreen of Mr Couto’s truck, and then the road. He was revived by a passing nurse, transferred to Cape Cod Hospital where doctors recommended to end his life that would be ‘intolerable’, donating his organs which – according to the doctors – would dramatically increase the quality of life of at least three or four other people. Subsequently, Pádraig spent the best part of two year in hospitals in three different countries.

Instead of donating his organs, Pádraig inspired and attends the An Saol Foundation – Life and Living with a severe Acquired Brain Injury (sABI). The work of the Foundation has improved dramatically the quality of life of many people living with a severe Acquired Brain Injury.

Life could be easier. Happier. But so could the lives of many.

Pádraig cannot do many things. But he enjoys life. He is proud of the work he has been doing as a champion with the Decision Support Services and, especially, the An Saol Foundation which would not exist without him and which he continues to inspire.

Last week, on the anniversary of that fateful day eleven years ago, we went to Dunmore East and had a wonderful time on the cliffs overlooking the harbour.

He was the one and only wheelchair user on the edge, pushing the boundaries. As he has been doing all of his life.

We never met Mr Couto despite our best efforts. Mr Couto never met Pádraig. We offered our help to the local police Chief and the Town of Brewster by sharing with them Pádraig’s story, educating drivers, telling them of the need to keep their speed down and their distance to pedestrians and cyclists on the narrow roads on the Cape.

We wanted to share with them the inspiration Pádraig has been to many families in dire straits.

There is nothing we can do about the accident.

We cannot change the beginning.

But Pádraig has certainly started to change the ending.

He will need everybody to contribute to this change. The people of Brewster, as well as the people of Germany and Ireland. You and I.