I spent decades of my life learning and teaching and researching about how to make digital content (computer programmes, websites, digital stuff in general) available to people in their language. For free. Gratis. One of the places where I promoted these ideas was the industry’s biggest event, Localisation World, hosted by Ullrich and Donna both of whom have been in the ‘business’ for (almost) as long as I have been. (We won’t haggle over a few years here and there:)

Anyhow, Localisation World is coming to Dublin laster this week. Donna and Ullrich took a day of to visit us and spend some time together.

Over many years (decades?) I had met them at different events, not so over the past three years. Three years ago, they had organised a big fundraiser for Pádraig together with another friend, Tony, at a time when all was still up in the air and we had been still in shock. Today, they mentioned the possibility of maybe organising another big fundraiser for An Saol.

It was a really nice afternoon, talking to two people I used to work with a lot, this time not about ‘business’, but in a much more personal way, as friends.

I had a long conversation with David and Sharon tonight looking at the new website and some videos they have been working on for An Saol. We are almost there. No Irish version yet, but a pretty good-looking English version that will just need a bit of review and tweaking.

Pádraig had another visitor tonight, a regular visitor who talks and reads with him in Irish. My day hasn’t come yet, but it will. The day that I will be able to say more than a cupla focal as Gaeilge.

He is enjoying the visits, different faces, different voices, speaking in different languages, about different things. Isn’t that what life is all about – people doing their thing, interacting, talking, being together, living. Simple.

I’ve been thinking more about how to make people stand up and say ‘no more’. No more maintenance. From now on it’ll be all about life.

How can any one human decide for another human whether their life is meaningful or not? Nobody has the right to decide that all a particular fellow human merits is being fed and hydrated through a tube? That their teeth don’t need attention (they will never be able to eat anyway) and that it doesn’t matter that they get dropped feet (they will never be able to walk again anyways)?

We need to tell the people who suggest it might be better had our family members died that they should keep their views to themselves. We need to shame and blame the people who want to make us and other believe that ‘maintenance’ (rather than neuro rehab in the widest sense) is the only viable option: they are violating the human rights of our loved ones.

I want the scandal to come out, to be heard and seen and felt all over the country. I want everyone to join me to say ‘stop’. How can I achieve this? Still thinking… 🙂

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Please don’t forget to promote An Saol Day, 18 June. Please get your tickets for the movie and launch today. Invite your families and friends. We need you there on the day to show our strength and commitment! Like the event on Facebook.

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On the way back from Leitrim, we stopped by Niall’s mother’s house to meet her and Niall’s sister.

What a family!

Niall’s sister Sandy has been maintaining a very active Facebook page about her brother’s accident and following recovery. This is how she introduces it:

This page is for Family and Friends to see Nialls PROGRESS following his TBI in 1989 26 years later, and to give Hope to people with TBI Never say Never

Check it out. It really is an amazing journey, maintaining their energy over almost three decades, against the odds and still making progress!

Today she told us that Niall has made terrific progress in the last few years and she has documented this progress on the Facebook page. It’s such an inspirational family who has maintained their strength despite the difficult times their brother and the whole family had to endure. What Sandy was telling us about their continued fight for her brother’s right to a life with respect and dignity made me so angry. No future seems to be what the health system had in mind for him, but the family and, above all, Niall himself, proofed them wrong.

While we were in the house, Pádraig was listening to every word that was spoken and followed the account word by word.

We hope that Niall and his family will be able to join us on the 18 June for the launch of the An Saol Project!

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Please don’t forget to promote An Saol Day, 18 June. Please get your tickets for the movie and launch today. Invite your families and friends. We need you there on the day to show our strength and commitment! Like the event on Facebook.

It’s in the sticks. In the middle of nowhere. Nothing like cows, birds singing, and insects taking over the world. Shocking connectivity and almost no sgnal even for the phone. Bad for stressed out city folks who probably would get near a nervous breakdown because their interweb-world could go belly up and they wouldn’t even find out.

We were here before after the accident, for a short visit. This time we’ll be staying for the night – another first! More tomorrow from a proper laptop with a proper keyboard. In the meantime we’ll be enjoying what remains of a really nice sunny Saturday afternoon and a real quiet night.

It was one of these days today, all of a sudden it’s over and you don’t know where it went. So many things all happening at the same time, as if there were parallel universes or as if life was a multiscreen cinema with various actions happening simultaneously.

In the morning, I got the invitations to the launch and the film printed – something I had not been able to do without the very generous help of one of Pádraig’s friends who translated everything into Irish for me. Thank you so much! Then we went to see Pat’s uncle in Harold’s Cross Hospice (you know what that means). Later I did the weekly shopping. Spent 3 hours (at least) trying to clear out the main waste pipe that didn’t drain. Talked to a PR agency. Checked out the room for the launch. And then two acts of utter generosity happened.

Someone will sponsor lunch on An Saol Day – so you have no excuse to stay for the launch after you watched the film with us in the Lighthouse Cinema.

And someone else, in fact a neighbour of ours, sponsored the overnight accommodation in the wonderful Castle Hotel for our German visitors.

Thank you to all of them!

Pádraig keeps enjoying the good weather and kind visitors coming to the house (one of his friends visited today at around lunch time, just after work!?).

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Please don’t forget to promote An Saol Day, 18 June. Please get your tickets for the movie and launch today. Invite your families and friends. We need you there on the day to show our strength and commitment!

Are you listening? Here’s a story from the cold-face of living in the community, the front line, with a severe brain injury (sABI), about someone in clear, undisputed need of neuro rehabilitation.

About a week ago, a therapist sent an email asking whether we would be ok with an appointment on 20 June. Between talking about recent developments and other stuff, there usually are about 15 minutes left for therapy during those visits. So we’re down to 15 minutes per month.

We also wanted to discuss the use of a MOTOMed with the arm-exercise part (which he hasn’t got at the moment), like the one Pádraig had been using in Hamburg (and which had been subscribed to him by a doctor and therapist). The initial answer was that Pádraig might not be ready for it, but that we could discuss this on the 20th.

To me, this sounds like the story of the standing bed that took, depending on how you count, 6-10 months to get. And in the case of the standing bed, everybody was in agreement that Pádraig needed it straight away and that the money to buy it needed to be made available.

What amazed me most was that there wasn’t a sense of ‘we’re sorry but we haven’t got more resources’, never mind a sense of ‘what an outrage’ – it was more like ‘matter of fact’. Normal.

I want to shout it out from the rooftops: It is neither normal nor acceptable nor right – it is wrong, outrageous, and scandalous that a proper rehabilitation programme is not available to persons with severe Acquired Brain Injury.

The problem is that not enough people are listening. Or is it that not enough people are shouting?

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Please don’t forget to promote An Saol Day, 18 June. Please get your tickets for the movie and launch today. Invite your families and friends. We need you there on the day to show our strength and commitment!

Earlier today, the newly appointed Minister for Health, Simon Harris, tabled a motion in the Dáil to establish a special committee in the Oireachtas to look at “a singular vision for the health service over the next ten years”. It made the news. And journalists were looking for reactions not just from politicians, but from ordinary users of the health system.

Nuacht, the main Irish language news on TV, went to Conradh na Gaeilge and interviewed Maria.

Personally, I think it’s good that this committee is supposed to deliver its plan in six months’ time, but I am not very hopeful that it will and that its work will fundamentally change the dire situation of those who require neurological rehabilitation.

Remember, there is a Neurological Rehabilitation Strategy (2011-2015) which did not even produce a draft implementation plan. This draft plan is now being worked on, but the documents I have see neither include a budget nor a time line – some pretty basic stuff one would think, even if one is not a health expert nor an economist.

If you’re based in Dublin, you will have enjoyed the glorious sunshine over the past few days. Today, one of Pádraig’s friends helped me to drive out to the coast road in Clontarf where we had a long stroll along the sea front, desperately looking for a shop that would sell ice-cream, unsuccessfully.

But it was a brilliant walk nonetheless. Dublin in sunshine is hard to beat.

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Please don’t forget to promote An Saol Day, 18 June. Please get your tickets for the movie and launch today. Invite your families and friends. We need you there on the day to show our strength and commitment!

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I’d never heard of the place. My guess is that few people have. It’s the name of a village that was located where the Jordan enters the Sea of Gennesaret, most likely at et-Tell, a ruined site on the east side of the Jordan on rising ground, 2 km from the sea – which poses, you might be surprised to hear, a bit of a problem to those interested in age-old writings.

Because it is reported to be near the place that Jesus withdrew to privately by boat when he had heard that John the Baptist had been killed and where he then performed his first miracle. (Strangely enough, there is an explanation for why a fishing village could have been so far from the water, but I won’t go into that now, you’ll be relieved to hear:)

Jesus’ first miracle was “the Feeding of the 5,000”, the only miracle (apart from Jesus’ resurrection) which is recorded in all four canonical Gospels. So it is important. In case you haven’t heard of it, here is a short summary.

The Feeding of the 5,000 is also called the “miracle of the five loaves and two fish” because just five barley loaves and two small fish supplied by a boy were used by Jesus to feed the crowd after he had had “compassion on them and healed their sick”.

When I was reminded of this story last weekend, I thought that the message of this first and most important of Jesus’ miracles was clear: with compassion there is no end to the essentials of life. Everybody can be fed and be cared for, in the widest sense of the meaning.

Imagine Jesus not helping sick or injured persons because they were too sick. Saying to his disciples “no point helping them, they have no future anyway; let’s help those with lesser injuries, at least they have a life ahead of them.” Saying, “take those five barley loaves and two small fish and enjoy them. Don’t you waste those scarce resources on those hopeless cases out there.”

You don’t have to be the son of God to know that saying something like this would have been wrong, would have been one of those sins which you can’t be absolved from by praying a Hail Mary and Our Father.

Here’s a group of people celebrating with Pádraig his birthday last Sunday, dreamboaters, who’d never give up on anyone. Not in Bethsaida, not in Dublin, not anywhere else.

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Please don’t forget to promote An Saol Day, 18 June. Please get your tickets for the movie and launch today. Invite your families and friends. We need you there on the day to show our strength and commitment!

What does it take to push things over the edge, to get them over the tipping point, so that an appalling situation, one that we are all aware of but don’t care sufficiently about, hits us so hard that we can no longer pretend that it is just another crisis, one of many we hear about every day, one of those that come and go but don’t stop us in our tracks, one that doesn’t stop us continue doing what we’ve always been doing, one that doesn’t require change?

Someone took a picture that changed the world’s perception of the Vietnam war. The photo of the soldier on a beach in Greece carrying a dead child kicked European leaders into action. The death of a homeless person in the now famous doorway across from the Irish parliament, the Dail, finally put homelessness high up on the political agenda.

What will it take for neurological rehabilitation to touch our hearts and minds, deep enough to effect change?

What will it take for politicians to realise that it is not ok to let young people ‘rot’ in nursing homes, to maintain them on ‘medication, hydration, and nutrition’, to deny them the appropriate rehabilitation because they do not represent a ‘return on investment’, to tolerate forced emigration and the tearing up of families because our health system is dysfunctional, to address the ‘unethical and grotesque’ one-year waiting time for just three months of even the most basic rehabilitation services, to allow a system that checks on toilets every half an hour but on patients once an hour, to keep senior doctors in service who tell parents to take their fundraising money and take a couple of weeks off out on the Canaries, to keep medical staff who suggest that it might have been better if the injured had died?

What will it take for a health system to unconditionally and enthusiastically support the desperate attempts to present a positive, well-grounded, and without-alternative solution to the scandal that the treatment of persons with severe Acquired Brain Injuries (sABI) today represents?

What will it take for persons with #sABI to be fully integrated in society instead of being ‘locked away’? What will it take for the ‘desperates’ to be treated with dignity and respect? What will it take us to STOP in our tracks and say NO MORE?

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Please don’t forget to promote An Saol Day, 18 June. Please get your tickets for the movie and launch today. Invite your families and friends. We need you there on the day to show our strength and commitment!

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Pádraig’s third birthday since his accident was his first at home. The day couldn’t have been better. Loads of his friends came to the house and, for the first time, we were able to sit in the newly designed garden (designed by one of his old school friends). Even Charly ‘Carlos’ Hulgraine, architect of Pádraig’s extension, and well-know Dublin-based artist dropped in, presenting him with a signed copy of a re-print of the 11 garrisons of the Easter Rebellion he painted. His friends brought in tons of food and some really nice and unusual presents. Above all, they brought love, friendship, loyalty: life. It was a brilliant afternoon that kept us busy making new happy memories. It distracted us from remembering that it was another of Pádraig’s birthdays, his 23rd, that we were together with him last before the accident. When we said good-bye to him before he went off on his J1 to go to Boston and Cape Cod.

It was Pat and I who had to leave early today. We had received tickets to see “The Boss” in Croke Park and just made it for the start.

Springsteen is the perfect rock musician – if that is not a contradiction in terms. The whole concert was a lesson in how to do a concert, and we had the highest seats in the house, right opposite the stage. It was a great end to a great day.

never, never give up!

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Please don’t forget to promote An Saol Day, 18 June. Please get your tickets for the movie and launch today. Invite your families and friends. We need you there on the day to show our strength and commitment!

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It was Dylan’s 75th birthday last week. ‘When the Southwind blows’ just dedicated a full hour of songs and poetry to the great singer, songwriter, poet, and person. Each of the songs reminded me, as it does most people of my age I suppose, of a place, of an age, of company – all long gone.

It’s a lost battle we’re fighting, I thought. We’re all going down the tube, we’re all going to die. It’s just a matter of time. The places, our youth, the company of our friends, all that disappears. What matters, I suppose, is how we deal with this inevitability, how we make our way down that road – or is it a river? (Think ‘dreamboat’:)

I’m in a bad mood. Maybe it’s just a consequence of still being too tired to be able to see beyond the horizon. But I’m thinking that time is of the essence. It’s the one thing that if I waste it, it has to be for a good reason. Instead, I’m wasting so much time on what seems to be irrelevant stuff. Not just now. Even more and even worse for the most time of my life. But it’s never too late to change, to get onto the Dreamboat (out of the rat race) and to follow the Southwind.

The first birthday presents have arrived for Pádraig’s big day tomorrow. A really colourful, nice big plant. A few special bottles of craft beer and a really brilliant CD.