“What kept me sane was knowing that things would change, and it was a question of keeping myself together until they did.“ Nina Simone
One letter can make a huge difference in the meaning of a word or when trying to find a particular person. Consider Sink/Sick, Line/Lime, Bake/Cake, Word/Worm, Bear/Gear – sometimes not just the meaning, but also the pronunciation changes dramatically, like in the last example.
I was looking up the German singer Nena and, perhaps because she is not so famous, instead I was directed to Nina (Simone). It turned out not to be as useless as I had thought at first. I made a connection I wouldn’t have made otherwise. Nina says that she knew that “things would change”. Nena “only dreamt” about what she was looking for.
Both kept at it. Neither of them gave up.
Pádraig’s last concert in his current ‘series’ was with the Coronas. He had ‘Acceess”. A Wristband. You got to have a wristband.
And they sang Heroes or Ghosts, Taibhsí nó Laoich. The song of Pádraig’s generation.
And it’s beginning to happen, It’s beginning to move I’ve seen a reaction, Now we’ve so much to prove
This coming week, on Thursday, it will be eleven years that I was in Sanya, Hainan, in the South China Sea, when I got a phone call in the middle of the night, booked a flight to Boston, drove to Hyannis, and broke down when I walked into Pádraig’s room. Because what, in utter desperation, I had tried to put down to an error became reality. It was not “nur geträumt”.
We’ve come a long way from Boston to here.
It was a question of keeping ourselves together, which kept us sane, until things changed.
Not to what they used to be. Clocks cannot be turned back.
But it’s beginning to happen. We still have so much to prove. Forever Young.
If you are depressed you are living in the past. If you are anxious you are living in the future. If you are at peace you are living in the present. Lao Tzu, alive around 600 BC in China.
We booked the tickets months ago and never realised that the three concerts were all taking place within a week.
The fabulous Lankum a week ago on Saturday in Kilmainham. Wednesday it was The Killers in The Point, also known as the 3Arena. Last night it was The Coronas in the tent in Fairview. This is not bad. Not bad at all.
For Pádraig, it was the Lankum gig that was one, if not the best night out since his accident. The stage was on fire, the weather was great, the music was magic, and tons of his friends were there to join him having a brilliant time – totally unplanned and as it should be, moving together, sharing the experience of a wonderful open air concert on a summer’s night. He kept smiling the whole evening and, probably, the whole night.
Pure happiness.
Yesterday was the annual An Saol BBQ. If I am not mistaken, it was the third one – and it never ever rained. Each year, we are wondering what to do should the heavens open. And each year, it turned out to be a good, dry early afternoon.
There were about 60 clients, staff, family, and friends enjoying the food, drinks, live singing by the great Maeve & Stephen, and each other’s company.
We could all be depressed about what happened to our family members. We could all be anxious about what might happen to them, or to us, in the future.
This is the present. This is where we are. We’d rather live. In the presence. We’d rather laugh and eat. Listen to music. Join in to a song. Be at peace. Be happy.
And those who were seen dancing were thought to be insane by those who could not hear the music.
Friedrich Nietzsche
Time, devourer of all things, the Roman poet Ovid wrote in his Metamorphoses in the 8th century, his epic poem in which he retells more than 250 mythological tales from the world’s creation to Julius Caesar’s deification. Their central theme is change and transformation, as well as the power of imagination and storytelling.
The idea that time makes things disappear has been described by many Western poets, writers, and philosophers.
This weekend, I am at a seminar for family carers of people with traumatic brain injuries, organised by the Hannelore Kohl Stiftung, a foundation set up in memory of the wife of the late Helmut Kohl, the German Chancellor of the re-unificagtion. Two nights in a hotel with a full seminar programme and time to explore the town, Bad Bevensen.
It’s a Spa town with a “Kurgarten” with all sorts of attractions, including a Strudelwirbelspirale producing a little ‘tornado’ in a water cylinder, and walls of mirrors making it hard to place persons and objects in space.
There are, of course, also the Thermal and Spa Baths with several inside and outside pools of warm saltwater. And, of course, the baths are fully accessible with incredibly spacious private shower and changing rooms for wheelchair users, special bath wheelchairs, and lifters to get into the pools.
Last week, we also went back, for the first time in years, to the newly renovated Enable Ireland Swimming Pool in Sandycove, which was as accessible and well equipped as the Bad Bevensen Spa.
Enable Ireland who had been closed for the past few years, like the accessible CRC pool in Clontarf. Just that they had taken the opportunity to upgrade their changing rooms to a level that is truly unique in the country, whereas the CRC hasn’t changed much for decades. For example, rather than being able to use a handheld shower after swimming, you have to move the wheelchair around the shower trying to meet the water coming from a shower head fixed on the wall. It would be comical if it wasn’t so real.
Last week, Pádraig went to vote in the local and European elections. He has done that every time elections came up since his accident and he is so proud of being able to make his voice heard.
He also went to see Lankum in Kilmainham for the first time.
Pádraig hears the music and is dancing with us. More and more people will being hearing the music and rather thinking strange things about us, they will realise what they have been missing.
Time devours everything but even when we are all gone, the world will have changed for the better. That change will remain. Always.
Those who believe in telekinetics, raise my hand. Kurt Vonnegut
I think both are really funny: the picture and the quote. Probably they both refer to something that is not possible.
On second thought, it goes way beyond this. Because what we used to consider impossible, has become reality: courts are no longer respected by those who loose a trial; elections only considered to be fair by those who win; whole regions under water just because of rainfall; temperatures above 50oC, like in New Delhi, become the new normal; killing tens of thousands of children in retaliation for a terror attack is self-defence; food poverty in the richest countries of the world while obesity is becoming one of the highest health risks; people looking out for themselves rather than for each other; lies becoming truths; violence becoming a peace effort.
It won’t take long until the awe we still feel when seeing an elephant on a tightrope or I would feel if someone raised my hand just using their brain power will become a distant memory.
In the meantime, here are some real nice real pictures I took last week in Griffith Park and near it.
I really like this park bench and imagine who it was and what it felt like when they were there, leaving this declaration of love. I couldn’t believe when I saw the Borussia Dortmund stickers on the car and was tempted to leave a note asking whether they’d watch last night’s match, and where.
Birthday
Last week, Pádraig celebrated his birthday. Twice. At home, with the cake and the candle. And in Hedigan’s, with his friends. I know some people who don’t want to get older. I always did, but only until my mid-twenties. Now, I’m not so sure. Pádraig had a great time at both of his parties. These are days when nobody thinks ‘what if’ and all celebrate ‘what is’. And are deeply grateful for that.
It was a very special day. In the company of very special people.
Book Launch
Sometimes, things you don’t plan turn out to be best. This is what happened when we decided not to change the radio channel when Raidio na Life, one of the Irish language radio stations Pádraig had worked with, changed from music to an interview.
It was an interview with Pádraic Ó Máille who has just published: Smacht – The Discipline of Success.
Pádraic used several concepts coming from the Irish language to explain what makes a great organisation. Really interesting, enlightening, and motivating. So on Wednesday we went to the book launch in Chapters, probably the country’s largest bookstore opposite the Ilac Centre in Dublin. We met and talked to Pádraig, who wrote a really nice dedication into a copy of his book, finishing with ‘Pádraic eila’. The former editor of the Irish Times, Conor Brady, introduced the Pádraic and highlighted the importance of storytelling – an art that is someone under threat.
Both Pádraic/g’s were delighted to meet each other and had a great chat. Each communicating in their own way. Pádraig could not have been happier to meet the man from Oranmore sharing his wisdom with us in the beautiful Irish of the West.
What would you do?
I walked into this bathroom last week. There were three lights: one was nearly gone, the next was already dead, and the third was flickering like mad. In my mind, there was very little time left until the remaining two ‘lights’ would join the third in ‘bulb heaven’.
If you worked in this place, walked into the bathroom, and saw these lights – what would you do?
Chance your luck, try to make your stay as short as possible and get out before the dark to come? Thinking: why is nobody fixing these lights?
Call maintenance – if such a role existed in your workplace?
Or, if it didn’t, get new bulbs and a ladder to fix them?
The fact that one bulb was already completely dead, another on its very last leg, and the remaining third one blinking like mad, made me think that people in this place had been taking their chances: somebody some day will fix this. This is somebody’s job. It’s certainly not mine.
We have this tendency to pass on responsibility to others who we can blame then if things don’t work out.
Elephants cannot walk on tightropes. Nobody can raise my hand with their brain power. War is not peace. Lies are not truth. But the ‘impossible’ can become the possible unless we take responsibility for the world around us.
Welcome to the real world. It sucks. You’re gonna love it. Monica to Rachel in first episode of Friends.
Monica was pretty sarcastic there. Several times and in just a few words.
If your dad tells you, “You need to live in the real world!” he probably means that you should be more practical and face your responsibilities. People who “live in the real world” generally have successful careers or serious plans for the future, says vocabulary.com.
Last Sunday, the real real world opened up for us. It was incredibly supportive, extraordinary friendly, and brilliantly safe and homely.
A picture speaks a thousand words. Here are 48 pictures which should make up 48,000 words – the longest blog ever.
Welcome to the Real “real world”. A world where people care for each other, have a big heart and a generous soul, and are happy in the company of each other. As close as you could get to paradise on earth.
I must be strong and carry on… Eric Clapton, Tears in Heaven
It is this time of the year again: today, Sunday 19 May, Pentecost, between 11:00 and 15:00, we will have an absolutely brilliant time in the fabulous home and in one of Dublin’s most beautiful gardens of Pádraig’s friends in 85 St Mobhi Road. Marie and her family have been organising a get together of friends and neighbours nearly every year since his accident to gather support for him. Coffee and tea, the most delicious cakes, and an amazing raffle are all part of this annual Coffee Morning. As is the good company of all the people who have been making this their annual meeting, spending time together in great company. Every year, with one exception, we had blue skies and gorgeous sunshine – like today. So join us today from 11am!
In the meantime, Pádraig’s friend Keira shared with Pádraig some more, professional, photos of her wedding with Emma. For me, the picture with Pádraig in the middle is the picture of the year. Talk about inclusion, equality, integration, and sheer happiness! The black and white pictures could not be classier and the group picture taken from the roof of the venue on the most beautiful grounds will give you an idea of the incredibly brilliant people who joined Keira and Emma for their very special day.
Last Wednesday, I went to see Eric Clapton. I wasn’t too sure what to expect – but he definitely was one of the musicians I always had wanted to see in concert. When we were sitting in the 3Arena, waiting for the concert to start, I had to check his age: 79. Two years younger than Joe Biden and two years older than Donald Trump.
Contrary to these two politicians, Eric gave me hope. One can remain cool and energetic with great skills and a fantastic voice, even at 79. He didn’t sing Wonderful Tonight, nor Layla or After Midnight, but he made up for it with songs like Hoochie Coochie Man, Nobody Wants You When You’re Down And Out, Tears in Heaven (for which he was joined by the brilliant Paul Brady) and Cocaine. The only time, the big screens did not show him and his band was when he sang Prayer Of A Child. Instead, the screen showed scenes from Palestine. It was a statement. As was one of his guitars in the colours of the Palestinian flag.
I thoroughly enjoyed the evening. There was a bit of a wait at the start that really was too long, but when Eric Slowhand Clapton and the band finally began to play the night turned magic. Too few people, if any, play music like this anymore. I felt so lucky and privileged to have been afforded the opportunity to enjoy the company of one of the icons of an era, in a way the ‘sophisticated and intellectual’ pendant to the Beatles and the Rolling Stones, the Blues version of Dylan, Mitchell, and Young.
When he sang Tears in Heaven, a song he wrote after his 4-year old son Conor died tragically when he fell out of the window of a high rise building in Manhattan, I thought that there are also Tears on Earth. There is more to tears and tragedy than dying.
Time can bring you down Time can bend your knees Time can break your heart Have you begging please
We must be strong and we will carry on. Here on Earth.
With our families, friends, and neighbours. Sharing and Caring. With Equality, Integration, Inclusion and Participation. With nobody being excluded because of who they are. All feeling the excitement, energy, and happiness of a fulfilled life. No matter what age, gender, or ability.
Thousands of years ago today, on Pentecost, tongues of fire came to rest on each of them. “Aren’t all these who are speaking Galileans?Then how is it that each of us hears them in our native language?”
Today, it is more important than ever that we understand each other, use a common language, talk to each other, live together, in harmony.
Today, we desperately need those tongues of fire, the Holy Spirit.
Being a fish out of water is tough, but that’s how you evolve. Kumail Ali Nanjiani
Some people spend a lot of time with doctors in the hope that whatever aches or hurts can be fixed, or even exchanged. Many doctors see it as their job to fix people’s injuries or illnesses.
When they can’t do that they move on and leave their patients with their conditions. There are times, when doctors continue with treatments which, they know, will most likely not save their patients. They continue with their treatment anyways as long as they get paid.
Those with a severe Acquired Brain Injury are like fish out of the water. The solution to their survival is not to be ‘fixed’, perhaps to have a part such as a hip, a liver, or a heart, exchanged.
They and their families need help to adapt to their new circumstances. Life changes and evolves. There is no going back. No ‘fix’.
The only solution to their and their families’ survival is to change, adapt, and evolve with their changed circumstances.
And it is about survival. Those who aren’t agile and remain rigidly attached to the past, trying desperately to get back from where they started, will eventually break.
Around 15 years ago, Pádraig and a friend went all the way up to Norway to see the Aurora Borealis, the Northern Lights. When we went to Iceland, we spent hours in a bus until finally we stopped and were able to see some faint lights on the horizon. On Friday night, this was the sky over North Dublin: Whatever the Universe had managed to do, it worked fantastically. The Northern Light on the Dublin Sky!
Last Friday, Michael Poschmann and Thomas Bayer came to visit the An Saol Centre and reviewed some of our clients. Both are orthopaedic consultants, Michael is the leading physician in the Neuro Orthopaedic Department of the Schön-Klinik München-Harlaching and Thomas is a consultant at the Midland Regional Hospital Tullamore. It was their fourth annual visit, the third in person. Michael specialises in myofasciotomy, a minimally invasive procedure aimed at releasing contractures which helped Pádraig in 2020 when he was completely abandoned by the Irish Health system. You might remember that we brought him to an A&E Department in 2019/2020 where they discharged and referred him to an orthopaedic consultant. Following a number of deferrals, Pádraig finally had the appointment 2 1/2 years later. Luckily, we had managed to get help in Germany in the meantime. Otherwise, Pádraig might not have lived to take up that appointment with the Irish-based consultant.
Earlier in the week, on Tuesday, veteran broadcaster Michael Glynn’s interview with me with went out on Dublin City FM. The idea was to share how the An Saol Foundation came about and who was behind all of it – a young man called Pádraig.
Life goes on and there is no way back.
This is why Bertholt Brecht’s Herr Keuner, Herr K., turned pale when an old friend he met on the street greeted him saying “You haven’t changed at all.”
If you don’t change you will become redundant. If you constantly try to go back from where you came, you will never progress.
Feeling like a fish out of the water is tough, but that’s how you evolve. Trying to fix the situation by focusing all your efforts on finding your way back into the water will kill you. Instead focus on breathing and evolve.
The end is only the end if you allow it to be the end.
Did Bono get it wrong when he sang in OneOne life but we’re not the same? or is it just a different way of expressing Sartre’s assertion that in love, one and one are one?
There is no other topic people have said more about than love.
“Where there is love there is life.”Mahatma Gandhi.“Fortune and love favour the brave.” Ovid. “Love will find a way through paths where wolves fear to prey.” Lord Byron – are just some samples.
Love is the thing. The one thing.
Last week, Pádraig helped to tie the knot for Keira and Emma, and celebrated with them a most wonderful day.
Their hearts were on fire. So was the place itself at some stage, literally.
It was, not just the most inclusive wedding, but the most inclusive event that I had ever the privilege to be invited to.
It made me wonder why this felt so incredibly special? Inclusiveness should not be a special experience but one we practice and experience every day.
This was Emma’s and Keira’s very special day and the beginning of a most wonderful life together. But it was also one that we will always remember as a day that put inclusiveness into practice.
Without a strategic plan. Without a positioning paper. Without official guidelines.
If you haven’t heard it yet, listen this Sunday to RTÉ Radio One at 19:30 to the fourth of six episodes of #LastOneOnTheTrain, listen back on RTÉ Player to previous episodes.
I’m sitting in a hotel room in Hamburg. Flicking through the channels. Stopping at a recent live performance by BAP, with a Wolfgang Niedeggen looking as old as I feel, playing the songs I danced to in the early eighties. They were songs of longing, full of energy and conviction, always with a great sense of justice, straight on, jraaduss. With a very distinct sense of what is right and what is wrong.
I am watching as he announces a song that he wrote following the huge demonstration in Bonn of 10th June 1982. A song, he says, that today is as current as it was more than 40 years ago. Think Ukraine, says he.
You could add: think Gaza, think Sudan, think Democratic Republic of Congo, think Afghanistan, think Haiti, think Syria, think Myanmar. Nearly 350 million people around the world are experiencing the most extreme forms of hunger right now. Of those, nearly 49 million people are on the brink of famine, says the US World Food Programme. They add: Conflict is the number one cause.
I find it hard to watch the man-mind misery where people are, for no reason, used as pawns, when they could all live in peace with each other. Niedeggen is right: we need to jump off the board and stop allowing those in power to use us as their disposable instruments.
I also find it hard, and sad, to see, today, a lack of energy and conviction we had when we were in Boon in 1982 and when Niedeggen first sang 10th of June. We need to develop our sense of justice and ensure that nobody who plans atrocities of any kind to whomever wherever and whenever, will be able to count on us. Plant uns bloß nicht bei Euch ein! We won’t be any longer your chess pieces.
While I am in Hamburg, collecting my Marathon Bag for tomorrow’s race I won’t be running, Pádraig is out in town, having breakfast served to his table in Bewley’s on Grafton Street.
I have had plantar fasciitis, an inflammation of the fibrous tissue (plantar fascia) along the bottom of my foot, for the last few months. At some stage, I could hardly walk. While it has been getting better lately, it didn’t get well enough to allow me to train properly, never mind to run 42.2k tomorrow.
So, I decided not to run this race but to support my three friends from Ireland who had decided to run it with me this year.
While I will be supporting them, I am also so jealous of them. There is nothing that compares to the buzz of a marathon morning, the hours on the road, the conversations, the determination to get over the finishing line, the sense of achievement.
In a situation that seems dire to us, he keeps going. He can be do proud of what he has achieved.
Yesterday, Playback, the weekly Saturday morning radio show, presented by Sineád Mooney, looked back at last week’s Episode 2 of the fantastic series on young wheelchair users in Ireland, Last One On The Train, presented by Susan Dennehy, featuring Pádraig.
Playback on Saturday, 20 April 2024 featuring Pádraig on #LastOneOnTheTrain
Just when Playback was over, we started a session in the An Saol Foundation Centre with Pádraig and the help of Fabian and Christiane, two wonderful therapists from Germany, assisted by Kay Coombes in the U.K. and Margaret Walker in New Zealand, no less. We tried out new positions that would help Pádraig to position and maintain his head and upper body position better, we even tried out the Andago which Pádraig managed brilliantly, taking steps, pushing the device forward and backward. It was a first, lots to practice yet, but first steps nonetheless.
Check out http://www.teachansaol.ie for details and updates on our efforts to build a dedicated National Centre for Life and Living with a server Acquired Brain Injury. Check out the home page, the About Page, and the picture gallery. There are videos on questions asked in the Senate and in the Dáil’s Public Accounts Committee on why none of our leaders is exercising their leadership, cut through the smoke, and allow the An Saol Foundation to deliver. There is even a video in which our new Taoiseach thanks the An Saol Foundation for their leadership when he launched, not too many years ago, An Saol’s pilot demonstrator at the National Carers Conference in Croke Park.
Will he announce the Next Step, Teach An Saol in 2024?
Ask your politicians when they come knocking on your door looking for your vote.
Hospi-Tales 