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?

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.

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!

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.

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.

Vietnam

Greece

Ireland

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?

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!

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!

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!

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.

There are days when I’m wrecking my head, when I think there’s nothing interesting to write about, when I wonder what you might think about my tired attempts to write down what was important that day.

The later it gets, the more difficult it is for my head not to hit the keyboard. I am writing on an Apple which decides to block the keyboard if I keep my finger down on a any particular keys. I have to open what I was writing in some other window and hope that what I had written will still be there.

Pádraig is doing well and we are planning his birthday for this coming Sunday. Some of his friends are organising a small party at around 3pm

I’m too tired to write any more… See you tomorrow! (Wdith less tiredness:)

Please don’t forget to promote An Saol Day, 18 June. Please get your tickets for the movie and launch today.

The first day without filming in a while. It feels very pedestrian and low-tech. It’s also a bit calmer, less going from one place to another, less trying to arrange meetings. But I think Pádraig really enjoyed the hustle and bustle in the house with loads of things going on. There will be a few days to ‘recover’ before his birthday on Sunday when we hope to welcome a few friends in the afternoon to celebrate his first birthday at home since the accident.

It’s the first day in a while that I’m feeling a bit less tired. Though still tired:)

Right, we really need your help to promote and attend the film and the launch on 18 June. You already know that and are probably sick and tired to hear me repeating myself ad nauseum. BUT – this is really really important.

Please: tell everybody in your family and all of your friends about the two events on 18 June and get your tickets (free, donation optional) on the corresponding Eventbrite page NOW.

• Film “Would you rather be dead” here: bit.ly/AnSaolFilm
• Launch of the An Saol Project here: bit.ly/AnSaolProject

There will be guests from at least three international neuro rehabilitation centres as well as Prof. Andreas Bender coming over from abroad for the launch. There will be representatives from ABI Ireland and Headway at the events. We need to show them, as well as the attending media and politicians, that we are a force to be counted on. Do what you can to get commitments from your friends and family that they will definitely attend. Get them to book their tickets. We need to fill the place to the top.

To them it is crystal clear that what is going on is a national scandal.

As you will remember, even a senior rehab consultant just a few months ago said that the only way for this scandal to end would be families “agitating”.

The 18th of June will be “An Saol” day when we will begin this process of agitation.

Please join us and be part of it: Help us to raise the awareness in Ireland that the needs of persons who survived a #sABI and their families are almost completely ignored by the health system. Help us to launch the An Saol Project that will demonstrate how to deliver long-term neurological rehabilitation to survivors of #sABI. Join international researchers, experts, practitioners and those affected on 18 June.

Note that date in your diary right now and get your (free) tickets. Don’t wait. Do it now🙂

This afternoon I went upstairs to have a 30 minutes quick nap. More than two hours later, someone woke me up to do something I just now can’t remember. You’d thought that this helped. I’d thought that this helped. But I’m still so tired that I can hardly keep my eyes open.

Since we came back, I wanted to put down some thoughts on the stay in Pforzheim, on the journey to Lourdes. I wanted to say how it was working with our new friend from ‘Hollywood’ interviewing people about their experience with and opinions about severe Acquired Brain Injury: a representative from the Neurological Alliance of Ireland, the CEO of Headway, the founders and owners of the therapy centre in Pforzheim, a consultant, a physio, and a team leader in Burgau, parents of four injured young people. Unfortunately, no-one from the NRH was available, nor from ABI Ireland – though ABI Ireland have said that fully support the An Saol Project and will be there for the movie an the launch on 18 June, and the NRH are still considering what they can do.

Here is something that you must do NOW (if you haven’t done so yet):

• Register for the movie and register for the launch right NOW (should you not have done so already)
• Ask your parents and children and friends to register today. Tomorrow, check with them whether they actually did register.

Remember – this launch will have to be our biggest show of strength and, at the same time, outrage about the way persons with a severe acquired brain injury are treated. We have to show our strength at the launch and our ability to deliver the three year pilot project demonstrating what neurological rehabilitation can achieve for #sABI survivors.

Today was the last day of many days of recording people who had to say something about how persons with a severe brain injury are being looked after and how they should be looked after. We interviewed those directly affected by sABI, families, those working in the voluntary sector, and those working in and researching neurological rehabilitation.

I have been completely exhausted by the whole exercise and am wondering how my (now:) friend filming the interviews is doing. My guess is that he is even more exhausted because for him, as all this is new to him: the topics, the people, the city, the institution and organisations, all of it.

Tomorrow afternoon the ‘film director from Hollywood’ (he doesn’t like me to introduce him like this) will be heading home. Imagine, this is the cousin of a friend who has just spent the best part of two weeks plus a long and costly flight from LA to Germany and Dublin in order to film material he will be using to produce (long and) short video clips to promote proper neuro rehabilitation for persons with a severe Acquired Brain Injury (#sABI) by An Saol, to fundraise for An Saol, and to promote the launch of the An Saol  Project. I, we, owe him an über-huge Thank you! Besos y abrazos.