Meeting with the Neurological Alliance Ireland (NAI) to discuss our response to the proposed implementation plan for the Neuro-Rehabilitation Strategy 2011-2015. On to a long talk with an Irish Times journalist about the need to change the hearts and minds of people, especially those working with ABI survivors: it’s never the end of life, to the contrary:it’s about the unbelievable will to survive and to get recover! Meeting colleagues in Headway next. A long call with a friend to nail down the dates for our autumn cycle from Hollywood to Napa to fund- and awareness-raise followed. Before An Saol’s monthly Board Meeting with some of the most wonderful people you’d ever meet.

All that after getting Pádraig ready in the morning for the PAs, and before exercising with him in the tilt table. There are days like today, when I feel he is making a super-human effort to talk, to communicate, to help with the exercises. When I see and feel and believe that we are almost one in pushing his recovery from those injuries so hard that doubts about its effectiveness are blown out of the water. When his believe in his own personal Dreamboat journey is so strong that you can’t but go with him, join him, support him with every fibre in your body and every good thought of your mind.

Have you ever thought about how Pádraig’s accident, and more: the way he has been dealing with it, the never-giving-up out-of-this-world will power, how or whether this has affected or maybe even changed your life? I for myself know that this night on Hainan Island catapulted me onto a trajectory that went completely out of control and launched me into a space “where no man has gone before”. The strange thing is that, deep down, I think I have started to change for the better…

PS: If anybody was available to go out this afternoon at around 14:30 with Pádraig, please let me know.

You have to draw one, at times. Sometimes it’s just a small one, like the one on the “É” in “Éirí Amach na Cásca” on the new wall in Glasnevin Cemetery commemorating all those who died during the 1916 Easter Rising. Sometime it’s a big one, like the one between those who were executed and those who fought with them; and those who executed and had fought with them. This new wall in Glasnevin Cemetery must be the first one ever anywhere in the world commemorating the dead, both of the ‘freedom fighters’ and the ‘oppressors’, on one big wall. Someone somewhere must be spinning in their grave. – At least this is what the German inside myself would feel.

Of course, Irish people are much less inclined to draw a ‘line in the sand than let’s say the Germans. I think that in Ireland nothing is as black and white as crossing that ‘line’ or not crossing it. I first learned that after an agreement in the North of Ireland had been signed and someone pointed out its ambiguity. Yes, the commentator agreed, isn’t it a real work of art to leave an agreement so open that both parties believe they had been the most successful in the negotiations.

There are sides in a conflict and you have to be clear about, as Florence Reece wrote and Pete Seeger sang, “Which side are you on?“. In the era of political-correctness-gone-mad, basic common sense as well as a sense of what is right and what is wrong are disappearing.

We went out for a walk today and got caught in a rain shower. By the time we were back home, we were both pretty wet. But rather than going indoors, we decided to sit outside and wait for a few rays o sunshine. And we weren’t disappointed – for about half an hour, we sat in the sun. What a lovely feeling that was.

Tonight I just feel empty and tired. There must come a day when I’ll feel the ground under my feet again.

Earlier today, I took out a couple of hours and started to clean up my ‘home office’ in the attic where I hadn’t been for the best part of three years. It brought back the sense of un-connectedness. It’ll take weeks, if not months to get on top of papers, letters, and books just left there when we went off to Germany. Now ‘supplemented’ by stuff I picked up on the way, still in cloth bags, never looked at again.

A good friend of ours lost almost all of her belongings in a house fire late last year. The tremendous loss caused her huge difficulties. In my case, it felt like a house fire — all my stuff disappeared for almost three years. The difference is, all that stuff which I didn’t really need for quite a long time, is now back all of a sudden, and I haven’t found a way yet of dealing with it.

Would you throw it all out? All the ‘rubbish’ bringing back impossible memories?

You recognise what kind of person you’re dealing with by looking at their socks. Don’t believe the people who’re trying to convince you it’s their shoes. They are wrong. It’s the socks! Watch them.

Now, Pádraig didn’t have much say in the selection of this pair, but I’d say he would’ve liked them. There’s loads of imagination and colour. A blue sky, a night sky with stars and a moon and a planet. No limits. Just space.

Tonight, we went out to a Pub to celebrate the graduation of the daughter of very good friends. It was great to see her being so happy, having worked so hard, now being prepared, with her PhD, for the next phase in her life. It felt real strange being in a pub surrounded by a sea of ‘normal’ life.

Check out a letter by the CEO of Headway in response to the article in the Irish Times about the long waiting times for the NRH.

Anaju, Vorhang auf – a great German song. “Die Welt geht nicht unter, nimmt nur ihren Lauf”.

I’d never heard so much about “risks” in my life. The past two and a half years seemed to be just full of them. Never had I been involved in as many “risk assessments” either. It made me feel like there was danger lingering around each and every corner – and sometimes even on what seemed to me like a straight road where all the obstacles were clearly visible.

You know, I know: Life is, indeed, risky.

What became clear to me only lately, however, is that when risk is assessed it is not the risk to Pádraig, or other injured or sick people. It is the risk to those supposed to be looking after them.

One of the risks, recently assessed, for his carers, was to hold up their arms to support Pádraig’s head when he is in the tilt table.

Mmmhhh – I hear you thinking. And you are right. I was wondering myself.

Talking to other people in a similar situation recently, I heard that they had 28 different carers in just one week looking after their family member. I couldn’t even imagine the risks there, risks for 28 (!) carers.

I also heard that another family asked, in a nursing home. how often someone came into the room to check on their family member. They were told that someone would come in and check every hour. That did not sound so bad to them until they saw a list in the toilet where someone had to verify, with their signature, that they had checked the toilet – every half an hour. I guess, there are more risks in the toilet.

I am going to check if I can book an evening in the Laughter Lounge. On 01 April next year. You could not make it up if you wanted to. Sadly.

… Pádraig got a visit today from people I hadn’t met before. Two kind ladies from down the road called in to say ‘hello’ and to wish him well on his road to recovery. What a nice surprise and what a kind gesture!

So many things happened today that it would be difficult to share them with you in any detail unless I had the night to write them up and you had the time (and the patience) to read through them.

What they all had in common are layers of disfunction and large numbers of people without function. Some of the things that happened are classics and should really be used as ‘real life’ teaching material. Really urgent problems are addressed by organising meetings at some time in the future – when an immediate straight talk would do the trick. Meetings are, it seems, the accepted mechanism to solve problems.

It’s late. I have to go now. – Tomorrow morning, bright and early, in the middle of the night, I’ll bring our friend to the airport, she will be returning to the West Coast of the US from where she will be helping us with the organisation of the “cycle for lives” stuff.

For today: good night and sleep tight.

There was a year full of shock and horror, a hope-against-hope that this might all just have been a bad dream, a slow realisation that this was not a piece of news but our reality, Pádraig’s fight for survival. The next year was about becoming stable physically, no more big scares, starting to breath through the mouth and not through a tube, beginning to eat, to drink, to smell, to taste, to make sounds again. The third year is about starting to live a life, about starting to communicate much better, about starting to make decisions again.

We will mark the end of the third year with a cycle from Boston to Brewster via Hyannis. We will be in Brewster at the spot of the accident at 10am.

After that, there could be a chance that our lives will slowly move from feeling extra-ordinary to ordinary with some everyday routine. Only that this will never happen. I know this sounds crazy and like a stupid dream. But once we know that Pádraig can fly, or I find a boat that could get us there, I will start planning this trip to Alaska in earnest.

Yesterday, Pádraig had been really unsettled. It was a reminder of how vulnerable he still is. So we did not go out this afternoon. But a really good friend passed by nonetheless and we had a really lovely honest to God afternoon in the house, with Pádraig pedalling several kilometres on the viva el MOTOMed.

Man awaiting hospital discharge for over four months. No rehabilitation place available for Brian Murtagh.

There was a article in today’s Irish Times about a man from Navan who could be discharged to the NRH, but cannot because of the enormous waiting times there. Meanwhile, people are desperately waiting for his hospital bed. Made me think of Pádraig occupying one of these priceless beds in the NRH for almost four month – to be assessed for a home care package.

http://www.irishtimes.com/news/social-affairs/man-awaiting-hospital-discharge-for-over-four-months-1.2591319

Flowers. I wrote to them and they got back to me. Couldn’t see a problem in us using their cover of “I can see clearly now” and, and they’ll be happy to play for An Saol. I think we’ll have to start planning the first annual An Saol Ball for Life (might have to find a better name for it:).

Before that happens, there’ll be a few other actions happening. The plan is to launch a new website at the beginning of May which we will use to raise awareness. In June, we’ll have the film showing, they launch of the pilot project, and the cycle in Boston / Dublin.

A number of competent people have now reviewed the proposal and I will talk to potential partner organisations in Germany over the coming weeks. No feedback from our contact in the HSE yet. But that will come.

Pádraig today was pretty exhausted from the two long days out over Easter. Rather than going out tomorrow, we’ll most likely stay in and, maybe, watch a nice movie.

Today in three weeks time, Pádraig will have finished his first day in Pforzheim if all goes according to plan.

This was another first for Pádraig: going into Trinity College Dublin after more than 2 1/2 years. Walking around what must be one of the most beautiful universities in the world. Going into the Chapel where he last read out statements on Irish language policy. Where his friends were last in on 04 July 2013 for a special service, praying for his survival and recovery.

Today, we went to see a play one of his sisters was involved in writing and that she was performing in. It was the first time ever (ever!) that the Proclamation was read out in Irish and in English (she read out the Irish part). Pádraig got a very special official welcome from the RTE Journalist introducing the proceedings. So many of our friends and family came to see the performance, some of them met Pádraig for the first time; some we met for the first time. It was a great afternoon out.

After the play, we took a detour back to the car and passed by the signs to the Seomra na Gaeilge — and noticed that the room ain’t wheelchair accessible. Who would have thought that this would be a pre-condition for him ever going back into that room that he had worked for so hard.

Tonight, a good friend arrived at our house who moved to California some years ago. Somehow, time passed and it got very late — which is, I suppose, a good sign. Having late nights from time to time is good.

One memory didn’t get out of my mind today. It was about a day Pádraig told us about, when he had just finished his degree a little under three years ago. It had been a beautiful day. He had been sitting on the grass in TCD and he was thinking back and remembering the absolutely brilliant, energetic, pure fun, satisfying, full-of-hope and -dream time he had had  with all his unbelievably smart, beautiful and fantastic friends. He told us how sad he had been on that wonderful sunny day sitting on the grass in TCD thinking that these times, these times with sleepless nights, hard work, and great fun were now all gone and would never come back.

There was green, white, and orange smoke coming out of the planes chasing this other plane (the small white one on the left) that looked like the government jet. It looked like they were chasing it…

All this, of course, was part of today’s commemorations of the 1916 Rising in Dublin. Pádraig went out into town and really enjoyed the day. We went to Dorset Street, just opposite the Long Island Pub. We saw the whole parade passing by and were able to watch the proceedings around O’Connell Street on a huge screen.

Most of it was a military parade. With tanks, troop carriers, bands and loads of flags.

Not sure how and when it happened, but the events of 100 years ago felt very real today. Imagine, getting up one morning to wash yourself, to get dressed, get your things and walk over to the General Post Office. To declare the Republic. And be executed a week later.

Tomorrow, we’ll got into TCD to see and hear one of Pádraig’s sisters read out the Proclamation, in Irish, among other things. Might see you there?

https://1916.rte.ie/event/trinity-college/aisling-vision/