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/

“When you’re going through hell, keep going” – the famous Winston Churchill once said. And what first sounds like quite a strange bit of advice, does make an awful lot of sense on second thoughts. Because, what would be the alternative to “keep going” – not a pretty prospect!

So I’ll keep going in the belief that this will have an end.

(There is a really funny saying in Germany, and I hope you appreciate the delicate humour, that goes like this: “Alles hat ein Ende, nur die Wurst hat zwei” – Everything’s got an end – only a sausage has got two.)

Second day without Pádraig’s carers, or: PAs (=personal assistants). Second day in a house that is so much quieter, so much less stressful. It’s a strange thing to say because this is not the way it’s supposed to be. We decided that we all needed a break. They’ll be back on Tuesday.

In the meantime, we are figuring out how to use the shower chair. How to use his shower. (The one task that, strangely, the service provider has not problem with.) Pádraig is enjoying the shower so much, it’s wonderful. I’m sure we’ll have the shower-thing figured out within a few days.

A few years back, I was cycling back home from the train station (I had just returned from Limerick), through pouring rain, wind, and cold, listening to music. It was an unusual mix of music. All of a sudden, “Oh Haupt voll Blut und Wunden” (Oh Sacred Head, Now Wounded) with Bach’s music came up on my playlist. It was just before Easter and it made me think of the passion which, as I cycled, became to represent life. A constant fight. Pain. Friends along the way. Strangers who lend you a helping hand when you fall. They offer to carry the cross for a while. They offer you relief, at least for a while. In the end, however, you’re on your own and wonder, why God has forsaken you! You die. And then, you rise. Life goes on. Always.

When I told this, what was quite a, spiritual experience to a friend, they thought I must have been a bit depressed to look at life that way. But I wasn’t.

This is a dark night. I will not stop, however. I’ll get through this. And tomorrow, just in a few hours, it’ll be Easter. The day of our victory over darkness. A new beginning.

Fixing up a room can be heartbreaking. We found things almost forgotten, from his trip to the Cape, a note with details of what he had planned to do after coming home. All of a sudden, memories turned into reality again.

Behind his bed, just over where his head would have been, hangs a sheet of paper with a poem.

You’ll probably know the last verse:

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.

What can I say.

Pádraig had two visitors today, one of whom he had never met before and the other he had missed for a time because they were abroad. He shared one of his really nice broad smiles with them. What is it like to meet friends you had loads of fun with on the road less traveled?