Pádraig and I went to join a ceremony at noon today following the stations of the cross. Whatever you think about or believe in relating the stations, it is one of the most powerful prayers and ceremonies I know. I had half forgotten about it, so it really hit me very deep down. – To me it’s an allegory for what life is in essence. Life, from the very start is deemed to end, no matter what you do or think or try to do. In between birth and death, there’s a lot of suffering, whether you admit to it or not, whether you have experienced it yet or not.There are also those dreamboaters along the way who do the most incredible things to encourage and help you.

But while I was joining the prayers I could not help but thinking about the poem by Antonio Machado, used as the lyrics for what I would consider to be one of the most significant and memorable songs ever, La Saeta:

If you have a few minutes, listen to the song by Joan Manuel Serrat, and remember the times in Spain, one year before Franco’s death. It’s from a cassette (!) I bought and played and played and played at the time Pat and I lived in Salamanca and met for the first time. There are days when I wonder have I move on at all from those days. And I think I have a bit in myself of the young people who don’t like their birthdays, because they don’t want to grow up?

Omg, rn, afk, my bf is lol bc he’s on imgur w this tl;dr posts and nty. Imo, lame af. Oh, brb, I gtg. Ttyl!

Ok. I did not write this. I found it in an informal competition on writing the longest sentence possible in text speak. There’s all sorts of things to say about using abbreviations which most mortals have to look up on lists to make sense of. I’ve heard of people who made up abbreviations to confuse the receiver of the message – or just to have some (very weird) fun.

RFK is not one of these abbreviation, it’s the initials of the brother of JFK (everybody recognises that acronym), former US attorney general and senator Robert F. Kennedy. He once said – and I couldn’t find out in which context: Don’t get mad get even. You probably know that RFK was assassinated, so you would be excused if you believed that maybe, just maybe that strategy of his didn’t work as well as it sounds and as he thought it would.

I still like it. Mostly because “getting mad” has a taste of helplessness, of not being in control of the situation, like avictim-type reaction. Whereas “getting even” has the feel of an eye-to-eye relationship, a much more controlled, rational approach that will just not allow certain things to pass.

The one, but very important, downside to all that kind of thinking is that you might spend your time trying to get even, when the person or institution that is getting all your attention and all your available time isn’t really worth it. It could all be quite a waste of time. Trying to get even. When you really have more important, positive and proactive things to do. – Probably worthwhile reflecting on this a little more…

Today, I booked the hotels for the 2nd leg of the Camino Celta in Spain: one night in A Coruña, four nights in Ordes, and two nights in a priests’ seminary (no less) in Santiago. Great to have that organised and to know that wheelchair accessible rooms will be ready for Pádraig when he gets there.

As a good, newly made friend recently put it: Onwards towards Santiago!

It means so much and puts the pitiful ignorance of neglect into its place.

Dreamboaters. Ahoy!

Just after 6am, I heard the bin men coming down our road emptying those big bins left in front of the houses on our street, one by one, into their huge truck.

It made me think.

What would we say, how would we react if one day, the bin men with their huge truck didn’t show up. For whatever reason: maybe one of them was sick, the other went on holidays, and a third had decided he could not do these early hours anymore for personal reasons.

What would we say if we went to the airport to catch a flight and were told the flight had, unfortunately, been cancelled because the pilot had not shown up that morning but texted in that he had had a bad night and couldn’t possibly come to work?

What would we say if busses did not run on Saturdays and Sundays because although drivers had been hired to cover the weekend shifts had given their notice that from now on they could only do weekday shifts?

What would we say if any of the essential services we so much depend on every day, such as public transport, police, ambulance, hospitals, gas and water emergency, were not available one day because some individual staff were not available – for whatever reason?

There’d be war on the streets.

Yet, any of the above has happened to Pádraig. The service provider and the service commissioner allow agreed shifts to remain uncovered.

It seems that what is right and what is wrong is often determined by the number of people who shout. You can be ignored, left behind, and abandoned – as long as you are the lonely voice in the desert no-one is going to hear or listen to you, never mind care about your needs.

Today, Cystic Fibrosis sufferers and their families celebrated because the Government and Simon Harris in particular had succeeded in agreeing a deal with drug manufacturer Vertex that will give them access to vital drugs, such as Orkambi and Kalydeco. The women (!) who had led the campaign that ultimately led to this deal were on today’s RTÉ Radio One Ray d’Arcy show. They went out of their way to thank Ray and other presenters, among them Joe Duffy and Claire Byrne, for their support which made this groundbreaking deal possible. – It seems that health policies are determined by media pressure and that nobody sees anything wrong with that. You have the media on your side, the sick will get what they need. You don’t have the media on your side, you can ‘safely’ be abandoned, your children can be made a ward of court, and necessary treatment can be denied.

I think there’s something fundamentally wrong with this line of thinking. Wouldn’t you agree?

(However, I hear you thinking – if that is what it takes???!!!)

Too many things going on, too tired to write, more tomorrow.

Love – Loss – Life, a play put on by students of the School of Nursing at DCU and RythmRoomDubin working with disabled (enabled?) actors, was Pádraig’s highlight today. He went up to DCU for a lunch time performance in the famous Helix Theatre and enjoyed not just a really good play, but also witnessed the proof (if that was needed) that there are things we all have to deal with in our own way: love, loss, life.

My take away was one of the last sentences in the play: “Hearts were made to beat, not to be broken”.

Some good news on a different ‘front’: Later in the week, I will meet with a senior legal expert to explore in a very informal way how the rights of survivors of severe acquired brain injury can best be reclaimed.

Ruairi Cotter broke the story on 01 March in The Sun, today Wayne O’Connor picked up on it in the Sunday Independent, tomorrow morning it will be an item on RTÉ’a Morning Ireland:

Over 200 brain and spinal patients face agonising wait as beds closed
Financial issues and ongoing lack of staff and resources blamed as patients are left in limbo by shutting of hospital beds and units
More than 200 patients with serious spinal and brain injuries will face a longer wait for treatment after the closure of beds at the National Rehabilitation Hospital.
A lack of finance and resources is being blamed for the closures as the hospital, in Dun Laoghaire, Co Dublin, does not have the required number of staff to manage increased patient workloads.

But there was another ‘item’ in the Irish Times last week that was, I believe, much more serious and even more disturbing than the incredible bed closures in the NRH.

Mary Carolan, the Irish Times court reporter, had three articles over as many days on a case the HSE has taken to the High Court. (Here is a link to article 1, article 2 and article 3.) The HSE is basically asking the High Court to allow its doctors not to resuscitate a young man with a severe acquired brain injury and not to up oxygen on his respirator – should this become necessary to save his life, against the wishes of the parents. The young man sustained the brain injury during treatment in a hospital and the parents have taken a negligence case against the HSE – which would become pointless, should the young man die. In the meantime, the HSE had made a successful application to the High Court to make the young man a ward of court as it could not reach agreement with the parents on the course of treatment, including resuscitation.

It is also important to know that the parents have seen improvements, while the doctors predict a worsening in the condition of the young man. A neuropsychiatrist has determined that the young man is conscious, in a state of minimal consciousness, and that he can follow commands. Contrary to what modern research tells us (have a look at what Joseph Fins of Cornell says in his book “Rights come to Mind”), and comparing a prognosis to looking into a crystal ball, his doctors believe that the young man has no chance of getting better.

Do you find all this hard to stomach? – If you do, you are not alone.

This should be a huge case: the health service actively planning to allow a conscious person to die by denying him live-saving treatment, and the President of the High Court admitting this case and seriously considering it. All this against the wishes of that person’s parents and while there is a negligence case against them being heard in the courts. And all this against the background of not one place available in this country, not even in the NRH, where this person, being on a respirator, would have been able to receive the neuro-rehabilitation that he so desperately requires, the treatment that would give him a chance of recovering from his injuries.

Where are the Human Rights lawyers, where is Amnesty International, where is the human rights movement that would make cases like these public, that would make sure that even someone with a severe acquired brain injury receives the treatment and rehabilitation that he has a natural right to?

Is it right, could it be right to allow a conscious person, even if he is only in a minimally conscious state, who cannot decide for himself, to die against the wishes of his family because the organisation looking after him believes it would be “in his best interests” – while this organisation is already being sued for negligence because the brain injury happened when that person was in their care for treatment of another illness?

I mean, …. come on guys! There is a ‘right’, and there is a ‘wrong’! And let’s not confuse the issues.

Back home and off to a 60th birthday party a good friend had invited us to on Baggott Street. He had asked his friends to donate whatever they had planned to give to him as presents to An Saol instead. What a very generous gesture! What a very lovely evening!

But  – here are some last (moving) picture of the first ever first leg of he Camino Celta by anyone ever!

Yes – we can!

Watch this space for the second leg, starting on 22/23 April from A Coruña!

We made it.

Pádraig has become the first person, not just the first wheelchair user, to complete the irish leg of the Celtic Camino, to be continued on 22 April with a walk from A Coruña to Santiago de Compostela.

What an achievement!

Thank you to all who walked with Pádraig and all who help and supported us to make this happen!

Dreamboaters! Tonight, in our dreams, we’ll set off sail to A Coruña to get there the evening of 22 April! We’ll start walking from the Church of St James in the city on 23 April!

Men wanted for hazardous journey!

Every day counts – and today was an absolutely brilliant day!

I’m shattered.and overwhelmed.,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,

This morning, Pádraig had a visitor who brought Pilgrim’s Passports and Connemara Shells, the likes carried by many pilgrims on their way to Santiago. A native Irish speaker, he chatted to Pádraig and got one of those big smiles reserved for very special visitors. – All part of the excitement of going to Dingle today in order to get ready for our 2-day walk tomorrow morning.

In the meantime, we finished our 4 1/2 hour drive across Ireland and arrived in Dingle. We just missed a lady working with the Kerry Camino Committee who left all the information for the Kerry Camino for us. Also caught up with family who had helped to arrange accommodation for Pádraig and us here in Dingle and had a great evening meal in the Pub.

Can’t wait for tomorrow!

Check out and share the Facebook page for Pádraig’s walk.