There are too many things going on and I am too tired. So tonight, there will be ‘Funkstille’, more tomorrow.

You can help in many different ways. And you know what? None of what we are about to do will work without your help! There is an endless list of things that need to be done. All the things that need to be done and we can’t pay for. And all the things that need to be done and that we need to pay for.

Apart from joining us tomorrow week for An Saol Day yourself, bring along everyone you can. But, most importantly, bring along politicians. They are the only ones that can cut through the red tape, literally. They need to be told by you, by us, that the way persons with severe acquired brain injury are treated in this country is inhumane and plain wrong.

Imagine. You start off with a very severe brain injury. As if that was not bad enough, your body progressively deteriorates because you are denied even the most basic treatment, never mind proper neuro rehabilitation. It is absolutely sickening.

We need to show muscle.

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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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A new website. A new funding site for the great An Saol Project. New videos. 200+ individual letters sent to friends, acquaintances, supporters, and people we have been in touch with. Diary notice prepared and emailed. Press Release prepared. Posters and cards printed and reprinted because we ran out of them. Another corporate sponsor secured.

The day isn’t long enough. And I’m getting tired too quickly. There was some great help available to prepare and post the personal invitations. There was very swift and professional help available to prepare the press material. – Without that help, I’d still be making lists of what needed to be done without actually getting to a point of doing anything.

I’m having too little time on my hands to care properly for Pádraig. I’m telling myself that this is just for the next few weeks and that after those weeks, I’ll have more time again to spend with him. I’m also thinking that if, no “when” the An Saol Project really kicks off, it’ll all have been worth it.

Also spent far too much time discussing emails, service delivery, meeting dates and all this other stuff that just keeps getting up my nose.

Still not heard from Aer Lingus about support for bringing Pádraig to Boston in about two weeks, despite our repeated emails and phone calls. We’ll try to get them say ‘yes we wild er, at least, no we won’t.

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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.

A full day. Packed. With all the emotions. In the morning, we all went to the funeral of an uncle who had sadly passed away. For some, it was the third visit to the same graveyard in less than 12 months. How do you keep your inner strength to carry you through these sad times? But then, it was the first time to see the son of one of the cousins, a gorgeous baby who immediately too to Pádraig and vice versa. A new life coming into the world as others depart. Is that what life is about? It just continues? And then back home, Pádraig had a special request: and out came the MOTOMed. It must have been so nice to exercise not in the enclosed space of his room, but outside in the fresh air. I went to meet a good friend who is an expert in ‘volunteer management’ and got a crash course in how to approach this best. (More about this later.) Finally, another good friend came in and we spent a few hours writing invitations and envelopes for An Saol Day, prepared a press release, and a letter to invite politicians. About to have a bite to eat now.

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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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What do you do when you see that something is fundamentally wrong? So wrong that tears come to your eyes. Your stomach turns. You wonder what is wrong with your fellow human beings that they allow this to happen? – Like allowing the body of a person (!) to deteriorate because they might never be able to use it as their brain is severely injured?

Care about their dropped feet? – Why? They won’t ever be able to walk!

Care about their teeth? – Why? They won’t ever be able to eat!

Care about their hands, their arms? Why? – They won’t ever be able to use them again!

Care about their digestive system? Why? – Medication can fix that!

If you are horrified about the thought of someone being given laxatives so that their bowl movements coincide with the working hours of carers. If you believe someone has a right to a life in community. Out and about. If you aren’t happy for the life of persons with severe brain injuries to be determined by mid 19th century lunacy legislation.

Here’s something you can do. Here are your tasks:

1. Always appreciate that life is something to be cherished and never dismissed – however grave the circumstances.
2. Tell everybody about it. Tweet. Facebook. Talk.
3. Join us on 18 June (see below) and make sure to bring along as many family members and friends as possible. Show the media and the politicians and the country that you care.
4. Support the An Saol Project connecting neurological rehabilitation with the latest research showing that intensive mental and physical exercise is the only proven approach to regain function. – No more neglect. Ever.

Today, we were talking to Pádraig about the launch and the cycle from Boston to Cape Cod the following week – actually, less than three weeks ago. We asked him would he like to go back to Boston and the Cape with us. I don’t have to tell you what he answered. So we rung and then emailed Aer Lingus telling them about Pádraig’s accident and our cycle, and explaining why he needed an executive class seat for such a long flight. Can’t wait to hear back from them!

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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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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!