The sky is not my limit… I am.
T.F. Hodge

Sometimes you meet people and they tell you that something is not possible because it has not been done before. Never mind done by someone like you.

Then you show them that it is not you but their lack of foresight, imagination, and creativity, that it is their need for security, their ‘more of the same because that is what I know’ approach, and their narrow mindedness that prevents innovation, that prevents boundaries to be pushed, and layers upon layers of bureaucracy from being removed to make happen what should and can happen.

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Martin Naughton was a man who knew no limits. Not the sky. Nor anything else.

Last night, Pádraig went to the Tallaght Civic Centre for the play, No Magic Pill, that celebrates his life.

I cried watching it.

Years ago, I met Martin a few times in his house in Baldoyle. He was going to teach me all I needed to know to deal with our new life, its changed circumstances.

That never happened because of his untimely death, leaving behind the Independent Living Movement he founded, as well as the AT Network, Pádraig is now part of.

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Thirty to fourty years ago, a mother whose baby daughter had suffered brain damage after she received a 3-in-1 vaccine.

The mother, together with a group of parents in a similar situation, decided to set up a specialised Centre in Carlow.

Today, the Centre has more than 200 employees and is caring for 150 persons with intellectual disabilities. The Delta Centre offers Day Centre services, as well as respite and living services in the community.

Last week, a good friend and I visited the Delta Centre and met its founder and some of the people who set it up and are still developing it.

It was truly inspiring and extraordinary. At the heart of their service is a sensory garden and a café where their clients, families, and visitors meet.

I had never seen a garden like the one in Carlow’s Delta Centre in my life. There were endless attacks on my  sight, my ears, my sense of smell, taste, and touch. The extraordinary people who had developed the garden matched its sensational impact. These are people for whom the sky was not the limit.

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During the week, Pádraig had a session with people who have been developing accessible music technology with simple to use interfaces, and engaging ways to enjoy and interact with music.

They were using a Keith McMillen Bop Pad, often used by drummers, with 4 Independently programmable zones and velocity and pressure sensitivity. It was one of those magic moment when Pádraig realised that even with his limited controllable movements he could control aspects of his environment – and even play an electric guitar.

On Monday, we continued to work with Kay Coombes and Margaret Walker in An Saol, learning about different and most likely better ways for Pádraig to stand.

There are people who set themselves and others limits because they are not used to look behind the horizon.

There are people for whom not even the sky is the limit. People who never seize pushing their limits way out into the beyond.

Why remain boringly mediocre if you can excel, have fun, and enjoy life?

I’m no expert standing at a podium giving speeches. I share heartbeats. Compassion.
Elizabeth Berkley

Sometimes you witness those rare moments when the wind blows from the right direction, the stars align, and you’re just in luck. Last week, Irish soccer fans, whether they were in the stadium, in a pub, or on their sofa at home, lived through one of those rare moments when their team won against Finland.

Pádraig had another one of them this weekend.

And he went to see The Script. The man who can’t be moved. I’m not moving.

I’m not moving. Or am I?

Wilhelm Zinn, Jürg Kesselring, Berta and Karel Bobath, Pat Davies, Kay Coombes and Margaret Walker are probably some of the most important pioneers in neurological rehabilitation, if not in the world than at least in Europe. At some point of their careers they all worked in Valens and other Swiss centres, as well as in Burgau, founded by Max Schuster almost 40 years ago, when his daughter Evi suffered a devastating brain injury.

Some of these wonderful people have sadly passed away, some are retired, a few are still active.

Kay Coombes and Margaret Walker are here this weekend to work with Pádraig and teach us as much as they can in the short time we have together about positioning, breathing, and communication.

Their visit to and their work with Pádraig would not have been possible without the ongoing, incredible generosity of family and friends who have been supporting Pádraig’s rehab efforts.

On Monday, they will spend some time in the An Saol Foundation to see clients and share their ideas on how best to support them.

The weekend with them reminded me, if that was necessary, how much we need to learn about some of the most fundamental aspects of a severe brain injury. Although it was not for the first time that we heard about the importance of positioning, be it in the bed, in the chair, or when standing – but it is only now beginning to sink in. If you are sitting doubled over or holding your head in the wrong position, you don’t breathe properly, and your voice production suffers.

On the positive side: Our two friends did not give lectures. They shared heartbeats and showed compassion while so generously teaching us and explaining to us some of the fundamentals of brain injury care and (re-)habilitation.

To succeed you need experience, guidance, an openness for new approaches, and – like the Irish soccer team this last week – a good bit of luck. That is when the wind blows from the right direction, the stars align, and the universe is on your side.

Whichever way you do it. A win is a win. In the end, that is all that counts.

“You can accept reality, or you can persist in your purpose until reality accepts you.”
Robert Brault

Have you ever been promised anything? Perhaps many times? Were the promises kept? Perhaps some?

Who kept their promises and who broke them?

Napoleon Bonaparte, reportedly, once said: “If you wish to be a success in the world, promise everything, deliver nothing”. It worked for him. Although not in the long run. Following his success, he died when he was only 51, out of power and exiled from France. 

Trump promised, according to US News, to launch the largest deportation program in American history to get the criminals out; end the green new scam and increasing oil and gas drilling; fire special counsel Jack Smith; end Russia’s war against Ukraine. Some of this, he promised, he would do before he would even have taken office, some within seconds of having taken office; but certainly all within the first 24 hours of having taken office. Promised! – Will he deliver?

We have the promise of politicians and the HSE to provide us with the means to start building the An Saol Foundation’s National Centre next year. – Will they deliver?

There are very concrete signs that reality is beginning to accept us. – Because we persist in our purpose and we deliver.

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Last week, Pádraig discovered how lovely the newly renovated Café in Dunnes Stores in the Ilac Centre turned out.

We used to go there, especially during the winter months when it was too cold, too windy, and too dark to do much outside. The Café was alway nice. Now it is outstanding. And so are the people working there and the people frequenting it. They could not be more helpful.

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I remember to have been more than apprehensive to go out with Pádraig when he had just left hospital. I know many families who still are apprehensive to go out with their injured family member, even after years following their injury. Not everybody is ok with attracting attention to, let’s say, the tricky situation they find themselves in. But there are good experiences. When it’s not pity. When it’s genuine help.

Could it be that a bit of the world is changing for the better?

Could it be that reality is beginning to accept us?

I’m nearly sure that you might prefer that not all promises ever made were kept.

However, I can tell you that one promise will be kept:

We will not accept a reality in which our injured family members are seen as a burden, as a bad investment for healthcare and support, or even just as an inconvenience. We will persist in our purpose until reality accepts us and all of our family. Nobody will ever be locked away out of sight, out of mind – just because they are different. Nobody.

“Stay committed to your decisions, but stay flexible in your approach.”
Tony Robbins

Have you ever had the feeling that you have taken something on you’re not quite ready to handle?

One way of avoiding the lottery system to access the Dublin Marathon is to register for next year’s, once you’ve finished the current one.

That’s what I did last year. It seemed a save bet. Nearly 11 months of time to prepare really well and to feel good about it.

Then came my plantar fasciitis in the spring that took forever to recede to a point where it became even bearable.

When October, and with it the date of the Dublin Marathon, approached, my training had been – let’s call it: inadequate.

Real doubts began to settle in at the registration the night before last Sunday. The RDS was filled with terribly fit people who couldn’t wait for the big day.

When I looked at the route and realised how long these 42k were, I asked myself whether the sensible thing to do would be to just face the facts of my age and level of fitness and pack it in, to leave this race to those who were able for it.

But then I thought: I have signed up to this. So I will finish it. Not in a time to shout about, but in time.

What changed was not the decision to participate, but the approach to the race.

What sustained me during those long hours from start to finish was the picture in my mind of this pint we were going to have at the end, having crossed the finishing line. All pain would go away and be replaced by an enormous sense of achievement and satisfaction.

There were times during the race when even the prospect of a cold Guinness waiting for me at the end didn’t quite do the trick. There were times of doubt. Absolute exhaustion. Pain. But with each step, the distance between myself and the end became shorter. To a point where I was sure it was now short enough for me to make it.

To my amazement, it worked. Both finishing, and having this wonderful pint in the best of possible companies.

Now I have time to prepare really well for the Hamburg Marathon in April and, perhaps, even for Dublin next October.

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During the week, we celebrated Samhain or Halloween in An Saol. Pumpkin cutting. Costumes. Skeletons. Scary sounds and all. There were witches, Rocky the boxer, ghosts, doctors ready to emigrated to Australia, famous sports people, and the ever-present Mexican.

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Pádraig continued his online sessions with Kay Coombes of ARCOS and Facial Oral Tract Therapy (F.O.T.T.) fame. It is amazing what can be done over a distance of hundreds of kilometres. In fact, any distance, using technology that people only talked about during COVID and that has now nearly become part of every-day life. I am not aware how widely it is being used to deliver therapy. In Pádraig’s case, he has benefitted enormously from Kay’s incredible knowledge and experience. As the sessions are being recorded, even people not present can pick up ideas and learn by reviewing them.

Since we started, Pádraig’s posture, positioning, breathing, and voice production have improved considerably. He is trying out new positions. We are learning to observe and help him where needed. This is about subtle, at times minimal, changes in movement or position which make huge differences to him.

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Yesterday, we were on our way to Cork, on the train, to join a double birthday celebration of one of Pádraig’s great friends. Since my nearly daily train commute to Limerick now more than a decade ago, I hadn’t been on the Cork train. And certainly not with Pádraig. A bit of traveling down memory lane.

It was very comfortable. And, in a way, very re-assuring, to see that Irish Rail’s system of checking tickets hadn’t changed: the conductor just requires a red biro.

In their case, they not only stay committed to their service, they also stay committed to their approach of non-reliance on error-prone high tech. As long as they have access to their red pens, the world keeps spinning ’round. The trains run safely.

We decided to travel using public transport. It’s so much more interesting then just getting in an out of your car. Also so much more fun and adventurous. People are so helpful. Each time we try this we’re surprised how well it works. We might have to juggle Pádraig’s chair around a bit more. We might have to wait a little for the bus. We might have to look for the lift. But, overall, it’s a brilliant experience and so much more social.

And then, there was the birthday party.

It was a demonstration of love and peace and enjoying life – which, after all, ain’t always that bad.

It can even be magic.

I have promised myself to change my approach to training. But I will stay committed to my decision.

Run when you can, walk if you have to, crawl if you must, just never give up.
Dean Karnazes

Today is the day of the Dublin Marathon.

The picture is that of Tommy Drummond. Not Dean Karnazes, the American ultra marathon runner.

Although, Tommy is at least, if not more, as focussed, determined and driven as Dean.

Tommy is also a most generous and kind man.

And in my personal context, one of the few people I know who truly understands what it means to have a son with a severe Acquired Brain Injury. Because Tommy also has a son, Seán, who like Pádraig, suffered a devastating brain injury in a terrible accident in 2019. And because Tommy and his family also never gave up but did whatever they could do to encourage and support their son.

Amazingly, Tommy ran last year’s Dublin Marathon not for Seán, but for the An Saol Foundation. But wait.

This year, today, he is running the Dublin Marathon for Pádraig and set up a fundraiser for everybody who would like to support him and contribute to his fundraising effort.

On his fundraising page, he briefly recounts Pádraig’s and his own son’s story.

Tommy includes a link to the video of an interview I gave in 2016 on TV3’s Ireland AM to Sinead Desmond and Ian Nocher.

I had completely forgotten about it.

Watching it again, after eight long years, it brought home the message that Life is not a sprint. It is a marathon. It leaves traces, is painful, and feels like an eternity.

Good luck to Tommy and all the other marathon runners today.

Please donate here if you can afford to do so.

We wlill never give up: Run when we can, walk if we have to, crawl if we must. But never ever stop moving.

Today I shall listen to the news and the football scores and the tally of the dead. 
Brian Bilston

Last night, Pádraig went to the Ambassador Theatre, accompanied by a very good friend who had invited him, to see and listen to Brian Bilston who describes himself as a “poet, philosopher and failure”. He thoroughly enjoyed the evening, the company, and the poems, giving it a 5 out of 5.

So on Saturday morning, I looked up some of Brian’s poems, as I had never heard of him before. Brian has been described as “a laureate for our fractured times”, and “the Banksy of the poetry world”.

One of his poems is about the weather forecast, more precisely about today’s climate forecast.

TODAY’S CLIMATE FORECAST

It reminded me of how, during the Franco regime in Spain, critics of the regime regularly tried to avoid censorship and prosecution by talking about the weather – when everybody who was closely listening knew that they were talking about the regime.

The poem echoed some of my experiences in recent years and, especially, in recent times with a “system” that asks me to run services for them but then feels threatened and goes into defence mode when I do exactly that.

I don’t have the interest, energy, time, or deposition to engage in senseless dealings with ‘systems’ or, for that matter, people – never mind fights. Life, I know this first hand, is too short and there are by far more important people and matters in life.

Above all, we are living in an open democracy, not a franco-ist regime. We deal with each other in a transparent, open, responsible, accountable, and caring ways.

When we talk about a front of chronic misinformation, scattered falsehoods, a prolonged spell of inaction, or a build-up of hot air, we don’t have to talk about the weather to protect ourselves and our loved ones.

We can refer to things by their name.

Or would that be, In summary: unsettling?

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Last week, Pádraig got a pair of new ptosis glasses for testing. They are already making a huge difference.

During the week, he had a meeting with the production team he is working with on a documentary, having great fun, letting the imagination run wild, playing around with ideas, making plans for the future. Being the man he is.

On Saturday morning, he had a nice and somewhat strange encounter of the fourth kind in a sunny park nearby where he went for a walk with someone who wanted to find out more about him, but had trouble to properly communicate.

Life is as good as I could be.

We just need the time, family, and friends to enjoy every minute of it.

And not allow terrible ‘noises’ to distract us from that, not allow anybody to suck out our oxygen.

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