Riders on the storm. Sitting in our kitchen. In our house. In our town. The double door to the garden wide open. Into the new apartment. The bedroom. With a low light. The ancient sofa bed beside the brand new NRH bed where he is resting. You know that it would be untrue, you know that I would be a liar, if I was to say to you, man, we couldn’t get much higher. When did I listen to The Doors the last time. We are in a completely different world. What Pádraig has shown over the past few weeks is nothing but sensational. Doctors would not really see someone with his injuries after two years. Therapists would long have given up. The lack of return-on-investment attitude would long have stopped any funding and efforts to help, support, discover, assist. Off to palliative care, to maintenance, to making life easy for carers with regulated induced bowl movements, catheters tube feeds, and oxygen via the tracheostomy – when life should be demanding, when we should be pushing boundaries every day, when we should be trying to leave our comfort zone for periods every day.


Martin captured the essence of it all in just a few sentences in a comment to yesterday’s post:

Padraig is showing the potential that has always been there. Others before him were never given the opportunity to show what they could achieve. Nursing homes or community care is what they got where there is little or no therapies for them. An Saol is the way.

19 friends have so far responded to my post of last Saturday, almost a week ago, proposing a plan of action for An Saol and asking you whether you were interested to help and get together (if you had time) to get cracking on the ideas.

I’ll be emailing everybody who signed up with the details of that meeting, but just to let you know now, the meeting will be on Monday, 14 December, 19:00 (location to be confirmed). By the way, it’s not too late to ‘sign-up’, even if you cannot make it to the meeting because you are away or busy that day, or because you do not live in Dublin. Click here to go to the sign-up page.


Pádraig is surprising us and his therapists almost every day.

How can someone, after two years, ‘all of a sudden’ correctly answer relatively complex questions? How can he start to move and start to control his limbs?

The other day, he pushed Pat’s hand to the side as she was giving him food that was just too hot to eat? Today, he picked up a tissue and wiped his mouth  – with a bit of support and guidance, but he did it. He also pushed one of his therapists.

The thing is: you’re not supposed to start doing this such a relatively long time after your accident.

Pádraig is moving into a whole new categories, people tell us.

They don’t know and haven’t understood that Pádraig has ***always*** been in a different category. There’s nothing new here. It’s just now become visible to them:)


Call it what it is. Call a spade a spade.

We have a proposed care plan. We have a proposed equipment list (almost). But we don’t have a therapy plan; not even an outline.

I have learnt that what is being referred to as ‘community’ by social workers, doctors, therapists, and nurses in the NRH is the service provided by the HSE to those living at home, in the community.

For the past eight weeks, Pádraig’s care in the ‘community’ is being prepared. That care does not seem to include any kind of therapy – unless you count good positioning, going for walks, or appropriate eating as therapy. I am talking about physio, OT, music, speech- and language, and cognitive therapies.

We have asked for therapies that would be recommended for Pádraig as well as for therapies that would be offered to Pádraig, but haven’t received straight answers so far.

I would understand if I was told: we have assessed Pádraig’s needs but, unfortunately, we do not have the expertise or the resources to cater for them. That would be straight. It would ‘call a spade a spade’. It would make it clear that something is needed that cannot be supplied. We could then work on changing this unsatisfactory situation – we all. Together.

But, I suppose, it’s not easy to ‘call a spade a spade’. It’s not easy to admit, openly, transparently, honestly, that there is a desperate, undisputed need that is not being covered. Even if that was one first step towards a better health system.

Roll on An Saol!

An Saol

Want to support, in a very practical way (or ways), An Saol? Sign up here (should you not have done so already). Everybody’s welcome! Let’s call the spades by their name. Let’s provide people with severe ABI with the specialised therapies they require. Let’s sail up the stream. In the Dreamboat!

Lig don ghrá ‘steach i do chroí

If you are a Kodaline fan, and even if you aren’t, you could do worse than checking out their new version of Love will set you free as Gaeilge. It’s beautiful. And it’ll be on a new disc to be released by 2fm and Raidio Rí Rá. With a bit of luck, it’ll see the light of day just before Christmas (according to one of Pádraig’s really good friends).

Screen Shot 2015-11-24 at 23.20.33

Tuesday is the day of ’rounds’. Not many news but time to ask questions and to clarify things. Then there was a combined OT and physio session where Pádraig started to respond adequately and correctly some quite demanding questions.

In my mind, Pádraig’s case had never been very exceptional, or rare. In my mind, there had always been many young people like him, with a sever traumatic brain injury, who needed the right support and continued care and therapy. We are now hearing that there are very few persons with his ‘profile’, not just in Ireland, but in the world, who would have had the kind of care, therapy, and treatment he received, and who, after more than two years, made such dramatic and spectacular improvements as Pádraig.

What all this means, I don’t know….

Today, we got a copy of a meeting report that the HSE will receive soon. This will inform the person(s) in the HSE responsible for making a decision.  It will happen. there’ no doubt agout it.

Tonight is one of those evenings I can barely keep my eyes open – better finish here for tonight…



When Pat helped Pádraig with is food yesterday, he did something very new and extraordinary: as the spoon touched his lips, he lifted his arm to push Pat’s hand away. The food was too hot!

Isn’t that great?


When I came in this morning I was told that Pádraig had to be suctioned early in the morning, that he had not been great with his breakfast, and that a little later he had vomited. During the day he really seemed to be down, barely responsive, and not at all himself. Nobody understood what was going on. Then we learned late this evening that he had barely slept and had tried to make himself heard as he was uncomfortable. The thought of this, the thought of a night or even hours like this brought up a whole bucket full of emotions. It was the first time this had happened and I hope it won’t happened again any time soon. Just imagine to be in such a situation for a second, minute, hour. The fact that Pádraig is coping makes him an absolute hero in my eyes.

Let’s wish him a good night’s rest. And pray he’ll be able to rests. – He deserves it.

PS: Remember – click here and let me know if you want to help with some concrete work for An Saol.


Around the block.

This weekend the weather was well enough for us to go out for a walk in the afternoon around the block, for the first time. Yesterday, they went down the road towards Drumcondra. Today, we went up the road towards Botanic Rd. and back via Lindsay.


It’s amazing how your perspective on footpaths and roads changes when you’re pushing a wheelchair. Footpaths that are not lowered at the corners making crossing the road a difficult manoeuvre. Gigantic trees growing in the middle of the footpath leaving just about the space needed to pass. Potholes and cracks looking as if a small earthquake had just hit Dublin. But it was brilliant. And it was just the first of many walks around Drumcondra and Glasnevin, and even down to the Botanics or the beach. Nothing like feeling the air, the wind, the sun in your face, hearing cars, people, kids, dogs passing by.

It’s also amazing how being away changes your perspective. It’s when you stop for a moment that you feel how tired and exhausted you really are. It’s also easier to see priorities.

One of these is to get An Saol and its services ‘on the road’. I think there are three items to be worked on in the first instance: a launch, the therapy services, and fundraising. If you want to help with that, click here and let me know!

Back in the NRH tonight, looking at Pádraig’s therapy plan for the coming week, we discovered a ‘team training community session’ preparing the next steps for Pádraig’s move out of the NRH and home, it seems. It all takes its time. But things seem to be moving. Eight weeks ago tonight, we were on the ferry from Cherbourg to Rosslare. Two days later, Pádraig arrived here in the NRH to be assessed for a home care package.

“We don’t choose to be born. But we choose to live.”

“We cannot choose to be born. But can we choose to be free?”

Around the block.



Sitting on a plane again, back to Dublin.

Pádraig is doing fine at home and none of us will have to go for this long drive out and then back to visit him in Dun Laoghaire (as much as I like Dun Laoghaire:) for a day or two.

I’ve been thinking of three things to do for An Saol, to kick it into action.

(1) Launch

I promised myself to launch An Saol in January 2016. That was two years ago. Now, whether it’s going to be in January, or around January won’t make that much of a difference, but I think it would be nice to have a launch event to let everybody know that it’s there and what it is about.

At this event, I would want to show what can be achieved by persons with severe brain injuries with the right support. I would want to make the point that persons with severe brain injuries have the same right as anybody else to live their lives, in dignity and with respect. I would like to celebrate the efforts by so many that made An Saol a reality (music, song, poetry, dance,…). I would like to do this some time in, or shortly after, January.

(2) Therapy Offering (The Sara Walsh Therapy Services)

An Saol has received an extremely generous donation from the parents of Sara Walsh. We got to know Sara and her family in Beaumont and became friends. She went to Pforzheim earlier this year and made tremendous progress. An Saol will offer therapy services for persons with severe brain injuries in her memory. These services will, in the first instance, be led by one qualified and experienced therapist and supported by volunteer therapists (either qualified or student therapists).

We need a job description. We need to circulate that description. We need to interview. We need to employ the most suitable person. I would hope to have that person in place by January.

(3) Fundraising

While An Saol will start offering support and outpatient therapy services, the aim is to find (or build) a suitable building with enough space for day care, in-patient care, and respite care (with a total of around 10 beds).

This will require a significant effort in fundraising and lobbying of government agencies. We will need one (or a small group of) coordinator(s) and many people to spread the word. We will need to set specific goals for the next year and more general goals for the next 3-5 years. We will need to identify and plan fundraising activities.

I thought it might be a good idea to involve the Irish-American community and have started to plan two cycles to raise awareness of Pádraig’s case in the US, and raise the need to establish adequate therapy services and care for persons with severe acquired brain injuries. Both would require a significant organisational and PR effort, and could involve actors, musicians, politicians, and, above all, US-based cycling clubs.

Cycle 1: From Los Angeles/Hollywood to San Francisco/Nappa Valley (approximately one week around Easter)

Cycle 2: From Boston to Brewster/Cape Cod (a few days to arrive on 29 June 2016)

In addition to the above, An Saol will need support for its infrastructure, for example a webmaster, a volunteer coordinator, and a PR/Social Media coordinator, a person or persons working on legal, social, and medical issues.

There have been many who have offered their help for An Saol. It’s time to get going.

If you are interested in any of the plans outlined above (or have your own ideas), let’s meet up. Go to this website to let me know which date would suit you best. If you want to help but cannot meet on any of these dates, or are not in Dublin or Ireland, let  me know too.

Better together!

Forever Young

Pádraig is home for the weekend today. It’s Pat, our daughters, and friends who will help him on the journey. Who will be with him tonight. I miss him. So much.

Pat told me how well Pádraig did today answering really complex questions yes/no. How well he did spelling three letter words, like ‘mam’.

There was, though, a problem with ‘dad’ (always is:).

They were going through he frequency alphabet. And he missed ‘d’, the first letter. And then he hit the switch just after ‘p’. Why ‘p’? What a pity they thought. Then he got the next letter, the ‘a’. And now Pat understood. Pádraig never ever called me ‘dad’. And he wouldn’t change that now – why would he? The same way he wouldn’t change his name to ‘Patrick’ a few days ago, when he was asked to spell it. So Pádraig was spelling ‘papa’!

Isn’t that wonderful! For Pádraig, this could never have been ‘just’ about a simple spelling exercise. Three letter words. Names. They have to be right or they’re not worth spelling!

A thousand miles away, I went to the Garding city offices this morning where the flags were flying half mast. I had to check the one on the left – it’s *not* the French flag, but the one of Schleswig-Holstein, the federal state Garding and Tating are part of. They are mourning. For the people who got killed in Paris by senseless violence.


What a difference to Hamburg this place is. The people in the office couldn’t have been nicer and more helpful. It makes you want to live in the country!

After the visit to the civic office, I spent the morning and early afternoon looking after a few other things that had to be fixed and then.

And then, there was time. Available for the taking.

So I went to Heide. Walked the streets, put my head into a few shops, went swimming. Normal things. It was good to have a day off. It was so sad to be on my own. In places where we had all spent so much time together. And will again.

I read through all the comments to last night’s blog. A few times. I don’t think that I ever got as much encouragement in my live. Ever. To say ‘thank you’ is not nearly enough.

So there is no option. Of course, the blog has to continue. Our effort has to continue. Our little revolution. The Dreamboat. We need to keep choosing the roads less travelled. Break out of the routine. Don’t accept the unacceptable. Stay wild. Build a ladder to the stars. Be righteous. Be true. With our hearts being joyful. With our songs being sung.

This is the song I sung in my head the night I booked the journey, the day and the night I travelled to Cape Cod Hospital. It’s one of my favourite songs, and one of Pádraig’s too. I was so afraid at that time.

Forever Young is a song that is a prayer. For you, for all of us. We won’t achieve world peace. But if we stay Forever Young, we’ll make the world, even a very small part of it, a better place. Love and peace.

Forever Young

May God bless and keep you always
May your wishes all come true
May you always do for others
And let others do for you
May you build a ladder to the stars
And climb on every rung
May you stay forever young
Forever young, forever young
May you stay forever young

May you grow up to be righteous
May you grow up to be true
May you always know the truth
And see the lights surrounding you
May you always be courageous
Stand upright and be strong
May you stay forever young
Forever young, forever young
May you stay forever young

May your hands always be busy
May your feet always be swift
May you have a strong foundation
When the winds of changes shift
May your heart always be joyful
May your song always be sung
May you stay forever young
Forever young, forever young
May you stay forever young

This version of the song is from The Last Waltz, the farewell concert by the legendary The Band, one of the best ever live concerts recorded. This is the audio – there’s also a brilliant video version of this, somewhere.


While I was on the Ryanair plane to Bremen this morning, I wrote about the blog I’ve been writing over more than two years now, every day.

I decided to delete it.

It was about the issues other people have with me writing about being sad and beaten. Issues other people have when I write about them, even if I don’t name them. Issues people have when I write about people in charge, saying who they are, who say persons with severe brain injury should only be ‘managed’, not treated for their injuries.

I am so infuriated by all this! Because only a heartless person could not cry and be sad at time in the face of these injuries, could not despair faced with the lack of care and therapy, could not become extremely angry at accountants running the health system.


Anyways, I did most of what had to be done in Hamburg this afternoon, sitting now in Tating on my own. When we all should be together.

Love and Peace.



Pádraig is not there yet.

To say ‘hello’.

But he holds the phone to his ear and listens.


He has been taking calls for a long time. Not “Germany calling” but “Calling Germany”.  (An interesting one for linguists: how word order can change the meaning dramatically:) He is not talking yet, but there is an attentive expression in his face, there are mouth movements, and there is, at times, a reluctance to give the phone back.

Pádraig is continuing on his spelling adventures. It was three letter words today. He is also continuing to eat much better and faster, and to drink better and faster. They started him on a medication that is usually used to get people to sleep. It could all be coincidence, but he might be one of the very few people for whom it has the opposite effect. In any way, there are great plans to develop his spelling much further.

I remember the day when a speech therapist in Germany first put a speaking valve in his tracheostomy, and we could hear his voice again for the first time since the accident. One day, he won’t ‘just’ be spelling, but talking, loudly, saying ‘hello’, giving out, discussing, questioning, telling us what he thinks.

I’d be really really interested in finding out, for example, what he’d say about yesterday’s announcement by the Irish Minister of Health that he will not introduce universal health insurance to fund universal health care, not now, not ever, because that would mean an additional 5,000 euro payment for the average family when these families were already struggling to pay the water charges. When he was interviewed this morning on radio, he said that he is still pursuing universal health care and was still planning to change the current system where those with money get timely treatment, and those without don’t. I was listening carefully but did not get how he proposed to finance universal healthcare…



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