Desperation is the raw material of drastic change. Only those who can leave behind everything they have ever believed in can hope to escape.
William S. Burroughs

This time it was a plane trip. No bridge meant we had to take the ambu-lift, a big moveable container, to the plane. Then a transfer from his wheelchair into a tiny aisle chair. From there into his seat between ours. On the way to the plane, in the airport, we discovered a disabled toilet with a hoist and a big changing table, the way it should be.

We were lucky with the weather. Although autumn, we could sit outside on the Arche Noah, have walks across the mile-long bridge out into the North Sea, and have delicious squid carpaccio, a variation of Pádraig’s favourite pulpo dish.

Pádraig was able to do this because we left behind our believe in a system we thought was there to help. It took desperation to do what we are doing. It meant drastic change. It meant choosing life.

“If you don’t know where you’re going, any way will do”, paraphrases the conversation between Alice and the Cat in Alice in Wonderland by Lewis Carroll.

We didn’t know where we were heading but we knew that other people’s plans for us were not ours, not Pádraig’s.

And so we went off, letting the movement define the direction.

Letting the direction define the destination.

One day we will get there. Finding bigger places, having adventures, making friends, enjoying good food, drinks, sights and new experiences along the way. Every day.

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

Living. Not allowing others to define us.

Any place is better
Starting from zero, got nothing to lose

Sinne Éire – We are Ireland. ‘S tá’n cinneadh anois fúinn fhéin – And the decision is now up to us.
Amhr​á​n na nGael, Song of the Gaels

If you ever walked down the steps to the Conradh, it’s Club or Bar to be precise, you’ll have seen the chorus of Amhr​á​n na nGael, the Song of the Gaels.

It’s not for a lack of trying, but in my nearly 40 years in Ireland, I’ve never mastered the language. So I asked Dr Google about the lyrics who, initially, sent me to “Amhrán na bhFiann”, Ireland’s national anthem, “the soldier’s song”.

Then I found the correct song, lyrics, and a beautiful recording of Amhr​á​n na nGael by Meabh from her album Mise le Meas.

Here is the full chorus with its translation.

Pádraig walked down these steps many, many times, no doubt, taking in the spirit of these lyrics. You can see what it might have felt like in the video his friends made for him, Dreamboat: A Song for Pádraig, Amhrán do Phádraig.

Saturday, 28th of September, was the last day the Club was open before it closed for a three-year renovation project that will transform the historic building, Number 6 Harcourt Street, where John Henry Newman began plans for what would become University College Dublin, and where Sinn Féin planned their 1918 election campaign.

Pádraig’s friends made sure that he wouldn’t miss the big night and organised a group that would help us to get him down the stairs into the basement Club.

We only stayed for a few minutes to say hello to Pádraig’s friends and recall Seosamh, Pádraig’s friend who ran the Club in his very own way for many years. He sadly passed away six years ago, almost to the day, on 26/0918, and is remembered by a beautiful picture hanging in a prominent place in the Club.

TG4 must have the full documentary they made about Seosamh somewhere but, unfortunately, I couldn’t find it. There is, however, a review of the documentary available as well as a beautiful clip recently put together by one of his friends, also available on YouTube.

We went away for a few hours and left Pádraig with his friends and their memories of long, fabulous, and, I imagine, some pretty wild nights – not that I ever heard the ‘full story’ about these nights.

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Last week, Pádraig went back to Leinster House to listen to the Joint Committee on Disability Matters discussing Article 26, Habilitation and Rehabilitation, of the UN Declaration of the Rights of People with Disabilities. The Committee had invited the An Saol Foundation, together with the Neurological Alliance of Ireland accompanied by MS Ireland. Following my short opening statement, the An Saol Clinical Lead shared details of our service, and a Board member from Galway told the extremely moving story of his son who is affected by a severe Brain Injury as the result of an unprovoked attack.

A full video recording is available on the Oireachtas website. If you don’t have two hours to watch the full proceedings, you can read our three-page, very short opening statement here.

In essence, we are presenting to the HSE, to the nation, a fully planned, designed, and specified project for Life and Living with a severe Acquired Brain Injury. A project that has been described in a HSE report as necessary, effectively delivered by An Saol, one that should be expanded, and one that could position Ireland internationally as a leader in this kind of disability service. Also allowing it to comply not just with UN Conventions but with national and EU legislation.

Because we believe that –

Services should start with the most in need, not end before they get to them.

There was a lot of sympathy and understanding in the Committee. As there is from the HSE and the Government.

But we need more than sympathy.

We are operating on a shoestring and as a charity. Nobody is involved in our work to buy a fancy house, car, or yacht – to the contrary. Six of Ireland’s largest building, engineering, and planning companies are philanthropically involved and have saved the HSE already hundreds of thousands of euro.

We need strong, decisive action and leadership – not long, bureaucratic emails that nearly take away your will to live.

Here is another verse from Amhr​á​n na nGael:

It is we who face the decision.

No one else.

Let’s keep the momentum going and take this unique opportunity to get things right.

There will be no one else to blame than us if we don’t.

Ah, you loved me as a loser, but now you’re worried that I just might win.
Leonard Cohen, First We Take Manhattan

Rather than trying to explain why they were wrong, have a look at the pictures.

Does Pádraig look to you like someone who has an intolerable life?

Would it have been better had he died?

This is a man who is happier than I could ever hope to be.

A man who makes other people happier than I, and probably most of us, could ever dream of.

Ah, you loved me as a loser, but now you’re worried that I just might win
You know the way to stop me, but you don’t have the discipline
How many nights I prayed for this, to let my work begin
First we take Manhattan, then we take Berlin

He is showing us a world as it will be.

His work has begun and he will not stop until it is done.

In Manhattan. In Berlin. In Dublin.

Wherever.

Abandon the idea that you will forever be the victim of the things that have happened to you. Choose to be a victor.
Seth Adam Smith

The highlight of last week was the arrival of a new client in An Saol who had spent years in hospital, a few months in the National Rehabilitation Hospital (NRH), and a year and a half at home with his wife looking after him. His life happened between bed and wheelchair. His wife had found An Saol. She and her husband were so happy to be among like-minded people. For the first time in at least two year, the man sat up on a plinth, outside of his wheelchair and outside of his bed. He’ll be standing soon.

There is a crack, a crack in everything
That’s how the light gets in

This family joining us brought home to me again, if that was needed, the reason we set up the Centre and a demonstration of the urgency of its development. When the joy had settled, I asked myself:

• Why did nobody in the hospital tell them about An Saol? – There is a Neuro nurse and a social worker who both visited our Centre.
• Why did the NRH not refer him to An Saol? – They have referred patients previously, even ones who were much less affected by their brain injury.
• Why did the HSE Disability Manager not send him to us? – HSE Disability Services in our area are fully aware of our services and they must have been fully aware of his needs.

First we take Manhattan…

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Friday night was culture night.

We went to St. Pat’s College, now part of Dublin City University, DCU. We saw DCU’s president, Daire Keogh, the Artane Band passed in front of us, and – above all – we went to the Seomra Caidrimh where students played the most amazing Irish music.

Siobhán was in charge of the sessions. She offered tae agus brioscaí and, without any introductions, asked how Pádraig was doing. When I later asked her how she knew him, she said that she had studied in TCD but was a bit older than Pádraig. She had organised the Rith, a relay race organised in support of the Irish language, held for the first time in 2010 coinciding with Seachtain na Gaeilge.

Pádraig had told me about the run and the fun they had, stopping by in schools along the way, with whole school classes joining them for a while. Siobhán was cutting the ‘I love Gaeilge” stickers that must have been around for decades.

It was so heart warming to see that Siobhán remembered Pádraig as he remembered the Rith. It also brought a whole load of memories, feelings, and emotions with it that I was just about able to handle. It was one of those moments when I admire Pádraig most: how he deals with this is beyond me. But he does.

He is not a victim but a victor. Everybody knows.

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I had forgotten to say that a couple of weeks ago we visited the Lough Rynn Harvest Festival & Vintage Day.

There were the usual exhibits: old tractors and tools. But also the almost exact Volkswagen Beatle we drove from Dublin to Madrid the day after our wedding; a real Spanish Churros outfit, a 20 euro Dublin millennium milk bottle, and, probably the most disturbing item, a famine coffin. The coffin, with a big black cross on top, had flaps underneath that were opened when the coffin stood over the grave. The body fell and the coffin was carried away to pick up the next dead body.

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Last night, we went to The Point to listen to the RTÉ Orchestra playing the songs of Leonard Cohen. He would have been 90 years old these days.

They sentenced me to 20 years of boredom
For trying to change the system from within
I’m coming now, I’m coming to reward them
First we take Manhattan, then we take Berlin

Here is what Tom Robbins had to say about Leonard’s voice:

It is a voice raked by the claws of Cupid, a voice rubbed raw by the philosopher’s stone. A voice marinated in kirschwasser, sulfur, deer musk and snow; bandaged with sackcloth from a ruined monastery; warmed by the embers left down near the river after the gypsies have gone. 

The voice is gone, but Leonard is still here with us. Everybody knows.

There is a crack, a crack in everything
That’s how the light gets in

If passing the parcel was an Olympic sport, we would be in with a chance of a medal.
Taoiseach Simon Harris

The following is worth reading, worth reflecting on.

It is an extract of an address by the Irish Prime Minister to the Kennedy Summer School in New Ross, Co. Wexford, on 30 August 2024, according to Mark Hennessy in The Irish Times, 31 August 2024.

Government departments and State agencies too often avoid responsibility and leave the public facing bureaucracy that is designed “around everybody and everything but the citizen”, Taoiseach Simon Harris has said.

If passing the parcel was an Olympic sport, we would be in with a chance of a medal,” he told the Kennedy Summer School in New Ross, Co Wexford, yesterday (on Friday, 30 August 2024).

I have a very low tolerance threshold for somebody telling me that, you know, that there’s some bureaucratic reasonwhy we can’t come together and fix this.

(…) More and more, I think, when it comes to public policy and to delivery of issues, [issues] cut across narrow, neatly designed departments, agencies and structures.

“The one thing that I’ve learned late, since becoming taoiseach in April, is that the job of a taoiseach in many ways is to try and overcome that. So you’re actually the only person in the Government who can pull all of the various strands together,” he said.

Mr Harris said he has told every one of his Ministers that they are “the representatives of the public in their departments, not the spokesperson for their departments”.

When I was in the Department of Health, I wasn’t there as a doctor. When I was in the Department of Justice, I wasn’t a guard,” he said.

“You are there in a representative democracy to be the voice of your people. It’s my job to be a disrupter.”

For more than a year, I have been trying again and again to get Members of Parliament, T.D.s, Ministers to take responsibility, to answer letters I wrote, to cut through the bureaucratic jungle the HSE is cultivating. Last summer, I filled in forms which I have been asked this year to fill in again. The same forms. For the same purpose.

How can I get the Taoiseach to do his job that he defined for himself trying to overcome distractions and pull all of the various strands together when neither the Minister, the Department, nor the HSE show decisive leadership?

How can I explain to the Minister of Health, the Minister for Disability, the Minister of Finance that they are “the representatives of the public in their departments, not the spokesperson for their departments”.

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We came back from Lourdes earlier in the week. Despite the heavy rain and the floods during the week, we managed to take part in a procession, do a bit of shopping, and light a few candles. I don’t think there is a place anywhere else in the world where you can get such a variety of statues of Mary or candles so big they have to be carried on trolleys.

There can be miracles when you believe, right? Even Whitney and Mariah have known this for a long time. The song is a bit cheesy but still nice, especially when you are in the right mood for it. Though I think that most miracles are not only happening because of believe but because of hard work, commitment, and love.

The miracle of Lourdes happening there every day is the peace, the love, and the friendship people share with each other in Lourdes.

We need some of this in our every day life.

We need more and even bigger candles to shine peace, love and friendship into our lives. Giving us the confidence, the strength, and the determination to disrupt self-serving bureaucracy and get it to work for the people who are paying for it to support them.

Then we won’t be in with a chance of a medal in ‘passing the parcel’ but in ‘getting things done’.

There can be miracles
When you believe
Though hope is frail, it’s hard to kill
Simon, who knows what miracles you can achieve?

There shall be no more death or mourning, wailing or pain for the old order has passed away. – The one who sat on the throne said, “Behold, I make all things new.”
Book of Revelations

In other words, for example: those of Bob Dylan – the order is rapidly fadin’.

Here are a few mind blowing things that have been happening:

You know Hoola-Hoops, snacks that come in rings, crack when you eat them, and taste really nice – at least this is Pádraig’s opinion. What he is doing with these snacks is just sensational. Enjoyable. Independent.

Many people who see Pádraig for the first time think he is asleep because damage to his third nerve makes it hard for him to keep his eyes open. But everything changes when something really interesting is happening. And this is without his ptosis-glasses helping him to lift his eyelids.

You remember the broken wheelchair. It happened on Saturday, 17 August, and we immediately told the HSE about it. Their Occupational Therapist notified their contractor who came up with several ideas but no action. Eventually, they declared the chair a write-off. The HSE OT Manager ordered a new base for the chair and started the search for a replacement interim-base. On Wednesday, 4 September, two and a half weeks after the break, I got a call to say they could collect, repair, and return the chair the next day. When I said that he was going away, the next available date was Friday, 13 September, four weeks after the break down. Talk about under-staffing and under-resourcing.

You will remember that we were told repeatedly, that Pádraig could not use his chair, it was too dangerous, and that the only safe place for him was in his bed.

I mean, the man had a Coldplay concert on and a pilgrimage to Lourdes coming up.

Luckily, our trusted, fabulous mechanic offered and managed to weld the chair – and he didn’t even charge for it.

We are also close to getting Pádraig the chair he needs, with a little help from his friends. In any case, Pádraig did not have to stay in bed. He could enjoy the Music of the Spheres and on Thursday he could go on his annual journey to Lourdes where he has already been enjoying the fabulous company of year-long friends, people who really care about him, include him, make him part of their lives, and do their utmost best for him.

The journey and the stay here are always full of activities, comfort, and adventure – like the river overflowing this morning, closing most access bridges. The goodness of the people who come to help here is mind-bending. They are demonstrating how the world could be if we didn’t allow maniacs to throw it into chaos.

At first sight, Lourdes doesn’t seem to have changed much over the past decades. The shops are still as tacky as they always were. Many ceremonies are still as hierarchical and patriarchal as they always have been. But many people come for other, very different, and less superficial reasons. They find a place and a space like no other.

The old order is rapidly fadin’. We can make all things new.

It’s up to us to make it happen.

Are you in?

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?