Never had a day like today. And most likely will never have one like it as long as I live.

The University of Limerick this week hosts five days of conferring ceremonies which will see 2,807 students graduate, including 56 PhD graduates. The President of the University of Limerick, Dr. Des Fitzgerald and Reinhard Schaler, Faculty of Science & Engineering at the University of Limerick. Photo: Sean Curtin True Media

The highlight was a Dean reading out in front of 1,000 people, colleagues, students and their families, including my own, over more than 10 minutes, with me standing and sweating on the stage, the reasons why the University had decided to give me this award of excellence for services in the community. I nearly died during those minutes.

Apart from those never-ending embarrassing minutes, it was a day that I am really grateful for. And I am grateful, with all my heart, to all the fabulous people who made The Rosetta Foundation and the An Saol Foundation possible (check out my wonderful colleague Tabea de Wille’s article on LinkedIn); and, of course and above all, to my family for their encouragement and support. It is them who give me the energy, it is them who make me continue when I’m about to give up; it is them who encourage me not to give up and do what many would consider to be the impossible; and it is them who do a lot of the work. Neither The Rosetta Foundation nor the An Saol Foundation would have gone anywhere, they would not have achieve anything without them.

We all had a great day, from getting up in the morning all excited, to the drive up to Limerick, to meetings and lunch in UL, the award ceremony, and meeting many of my old friends who I am missing.

Tonight, half way between Limerick and Dublin, we had a small family celebration. And Pádraig, tired as he was after a long day, was in great form. How happy I am that he was able to hear today that he is the inspiration behind An Saol and even gave the foundation its name.

Tonight was a happy day. A day out. – Back to ‘normal’ tomorrow:)

We tried out something new today. Thinking that diversity might spark motivation and could even bring some excitement into exercise sessions.

So we got this expanding band with two handles I had bought in Lidl a long time ago when I thought that, one day, we’d be looking for one.

Just in case you don’t know Lidl or Aldi shops – this is the way their middle isle works: you buy stuff you’re not really looking for, but they make it so irresistibly attractive that you buy it anyways, just in case one day…

And today was the day.

The absolutely amazing and thrilling thing was that Pádraig could actually use the expander he could grab the handles and pull them back away from the point where it was held, and not ‘just’ with his arms but also by pulling back his shoulders. This is only a short sniper of a much longer exercise.

I shouldn’t really be surprised anymore. But I am. Many of what I perceive as Pádraig’s ‘restrictions’ are not his at all but imposed on him by us by not giving him the opportunity to overcome them. The trick then is, the absolute necessity is, to constantly search for new challenges for Pádraig and to give him the opportunity to master them. Which sounds easy. But isn’t really. It’s a challenge I don’t master sufficiently yet.

Amanda Denton suffered a severe brain injury in May 2014. Her struggle for rehabilitation was vigorously supported and well documented by her partner Tommy on  “The Help Amanda Denton Get Rehabilitation Page” on Facebook.

Sadly, Amanda passed away last Saturday.

Hundreds of expressions of sympathy from people around the world have been sent to Tommy over the last couple of days. It will not take away the terrible sense of loss Tommy must be feeling but the knowledge that there are so many people thinking of him and Amanda might give him the bit of extra strength that he will need to get him through these difficult times.

Just a couple of years ago, Amanda’s case was highlighted by well-known Irish journalist Kitty Holland in an article she wrote for the Irish Times, “Brain injury rehab: ‘No one gave Amanda a chance’ – Woman’s partner is ‘disgusted’ at lack of ‘serious therapy’ after traumatic accident”. In the article he is quoted as saying that Amanda “never had a proper shot at rehabilitation”. And even today he wrote: “its not over I will dedicate the rest of my life highlighting the neglect in this country in Amanda’s name and wont stop till laws are made to stop it.”

Both Amanda and Tommy have been great fighters. I am sure that Amanda will never really leave Tommy’s side and will be there with him, supporting his struggle to make proper and adequate neurological rehabilitation for those suffering a severe acquired brain injury in Ireland a reality.

Here is one of my favourite songs. It’s by Victor Jara and it’s about remembering Amanda…

May she rest in peace

Perdonare, fargeban, vergeven, vergeben, fragiban, pardon, forgive. All these words have the same origin and are based on the same idea and meaning. One I had never thought of.

Remit (a debt), pardon (an offence), also “give up” and “give in marriage” (past tense forgeaf, past participle forgifen); from for-, here probably “completely,” + giefan “to give” (from PIE root *ghabh- “to give or receive”). The sense of “to give up desire or power to punish” (late Old English) is from use of such a compound. Says an online etymological lexicon.

So to for-give has to do with giving up (something) completely, it has to do with renunciation, relinquishment, even sacrifice. It’s a truly noble act. And one that probably prevents one from going insane, at least in some cases I’m familiar with. Unfortunately.

Funny enough, or maybe not, it was the Pope who hinted at the etymology of for-giveness last night in Croke Park.

Made me think.

Maybe it didn’t exactly take the Pope to get me thinking about the idea of what forgiveness really means, but he did. Last night was a really brilliant night out for us. We got tickets from friends and friends of friends who really went out of their way to make this possible. We got pretty close to the stage on the pitch because of some caring and friendly people But it’s the idea of forgiveness, of trying to be more humble, of giving up a bit of my pride, of moving away a little from the idea of being (always:) right, and instead to give it up, instead to liberate myself of stuff I won’t be able to change anyways – that is the one thing that will most likely stay with me for a long time. And will hopefully bring some piece. Allowing for my energy to be directed to ‘good’ stuff. Like the light that’s shining through the cracks.

They played my favourite music: Songs from Pete Seeger, Leonard Cohen, Bob Dylan and Shane McGowan. In Corke Park. For 82,000 spectators. And the Pope.

It’s too late and I am too tired to write much. About us going down to Croke Park to the concert organised for the Pope’s visit to the World Meeting of Families. I’ll be less tired tomorrow.

Just two things: We wouldn’t have been able to get in there with Pádraig’s wheelchair, had it not been for the generosity and help of some incredibly good people. And – when the Pope arrived in the stadium, someone with a voice pretty close to the voice of the late Leonard Cohen sang what must be one of the greatest songs ever, one of my all time favourites:

Whoever selected this song had not just great taste and knowledge of music, they also were extremely smart. There’s a crack in everything. That’s where the light gets in.

No truer word sung. Or spoken.

What have “You raise me up“, “Rock ‘n’ Roll Kids” and “The Voice” have in common? Well – they are all, what Germans would call, a little bit “schmalzig”, sweet, maybe a tad too sweet. The other thing they have in common is that they were (co-)written by Brendan Graham. And Brendan Graham is an all time friend of Colm Ó Meachair. Colm was a harp maker. He died five years ago, just 66 years old.

Colm built Pádraig’s sister’s harp. They say, it took Colm about a month to built a harp – which might be true if he had just been building one harp at a time. I remember, that it took many months and many visits to Colm’s workshop in Marlay House before the big day finally arrived. Colm’s harps were shipped all over the world and he was instrumental in the revival of the Irish Harp.

Tonight, Colm’s friends organised a concert to remember this incredibly talented and modest man in Marlay Park. The music was incredible and the concert featured many famous musicians and songwriters, one of whom was Brenda Graham. There was an exhibition showing off around 20 of the magnificent instruments built over the years by Colm – among them Pádraig’s sister’s harp!

The summer is almost over. School is about to start again. It’s time for the annual Coffee Morning organised by one of Pádraig’s best friend and her family. Please join us and spread the word!

Pádraig is getting back into his routine here. Not everything is back to the point where it was before the summer but we’re getting there. His physio is back in action and tried out some exercises on the floor today, to find out that Pádraig’s responsiveness and strength had improved quite a bit over the summer. He is really fit!

What those videos show is just a few seconds of exercises that went on for about an hour. To be honest, I’m not so sure how I would have done there myself. This is no joke. And the way he was lying on his stomach, which his feet straight, toes pointing to the floor, lifting up his knees from the floor, or moving his lower legs against resistance up in the air about 50 times – not bad.

I had 10 minutes this morning and checked out wheelchair accessible camper vans and boats (all in German, unfortunately – but with great pictures). Just looking at this made me want to head off. Immediately. Didn’t share it with Pádraig but will. One day!?

Clearing out things you don’t need anymore is great. It marks transitions, it’s a statement that you’re moving on, and it makes spaces for new things.

This is the stuff you get when you have problems eating. You might not be able to eat and get a balanced and sufficiently calorie-rich diet, but a lot of people can drink thickish calorie drinks which their manufacturers try to make more palatable by offering them in different flavours. Then there is calorie powder you can just add to your own drinks or yoghourts and the like.

It’s all a step up from liquid ‘food’ administered via a PEG, a tube into your stomach, using a drip. If you can’t eat either, you can ‘inject’ these drinks through a PEG as well, as soon as your stomach can take it.

When I came across these bottles, it felt like a blast from the past. Recently, time has not been the linear experience it used to be, but even from within this time bubble I seem to live in, this was a memory from far, far away – and yet so close.

The satisfaction of being able to dispose of these bottles and powders was huge.

And now, we have more space for stuff Pádraig needs right now: devices to help him to communicate, to support and strengthen his posture, to assist him with standing, to connect him with the world in all its diversity.

Cleaning out stuff and disposing of it, in this case, was a pleasure, not difficult at all.

Learning new words sharpens your thinking. And the connection between what your thinking and how you express it is not a one-way-street. There is an argument that says: if you can’t capture an idea, a ‘concept’, in a word or in words, it doesn’t really exist. You need language for reasoning.

“Discernment” is one of these new words I had to look up and learn, when I came across it reading about what happened 50 years ago in  Czechoslovakia. When I looked the word up, they gave an example of its use: “an astonishing lack of discernment”.

My own description of what discernment means would be ‘common sense’, but it is much more than that. It’s a virtue that allows you to discover the real meaning of things and to determine whether they are good or bad, whether they make sense or not.

The word was used in the context of the invasion of Czechoslovakia which was commanded by people who were anything but discerning.

It is really and truly worthwhile reading Marc Santora’s article in yesterday’s New York Times about the invasion. And it’s not just his description of events that will capture you, it’s also the picture reproduced in this article that will bring events back to life for you. He writes:

Many of the most famous images were taken by Josef Koudelka, who was on the streets with his Exakta camera loaded with film that he had cut from the end of exposed movie reels.

Mr. Koudelka’s pictures were smuggled out of Prague and published anonymously, credited only to “Prague Photographer.”

In their intimacy and vivid detail, putting viewers on the street with shocked and horrified citizens, they showed the propaganda flowing from Moscow — that troops were sent to restore order and had been welcomed by the people — as utter lies.

If this happened today, people would be live-streaming the events from their smartphones. Or: the government would just shut down the internet and nothing would leak out – because, today, nobody would have a clue about how to cut film from the end of exposed movie reels…

I remember students running through the streets of the cities in Germany shouting “Dubček Svoboda” and “Ho Ho Ho Chi Minh” as the Soviet Union invaded Czechoslovakia to stop Dubček’s efforts to create “socialism with a human face” and as the USA were bombing Vietnam killing tens of thousands of innocent people.

In 1968, there was a belief and an energy around that made many people think they could really change the world and make it a better place for all. Even, or maybe because, there were thousands of bombs dropped on innocent people and soviet tanks rolled through the streets of Prague.

I want to be more discerning than I have been. I want to make more of an effort to look behind the smoke screens. I want to continue the work of the people who wanted to make the world a better place.

Pádraig’s swim was sensational today. Really, to see what water can do to someone bound to a wheelchair is unbelievable. To see how he enjoys being liberated from much of his body weight and just float in the water. To see his super human efforts to walk, to shift his weight from one leg to the other. Today, and that was a first, he was holding on to the metal bar on the side of the pool and relaxed and then straightened first his left and then his right leg, several times in a row, all the time holding his head up high almost by himself and sustaining his body weight by himself.

I didn’t want to leave.

The spectacular is easy. It’s the every-day routine that gets me.

I have wondered about work as a train conductor. Or as a security guard. Or a ticket seller in a cinema. Or any job where you just do what you’re supposed to do. With as little stress as possible. As predictable as it can be. No surprises. No pressure. Where I’d just have to sit it out. It would give me peace of mind, I imagined. A solid doses of boredom.

Then I wondered whether work and life like that would be good for my mental health. The reality of life seems to be, at least in my case, that all sorts of unforeseen things happen that for some magic reason all acquire a dynamic of themselves. They start off as what seems to be a nice, manageable idea. And then, sooner or later, mutate into something that takes over my life.

And here’s me, at 12 or 13 years old, planning my escape to the never-ending forests and lakes, the Canadian wilderness. How did I end up in Dublin.

When we met Pádraig’s friends on the ferry back to Dublin, one of them said to me that he recognised something of Pádraig in me. That there was a demeanour we shared. Not sure how Pádraig would have liked that being recognised or even said, but I thought it was one of the most wonderful things anybody had said about us in some time.

I like to think we do. And much more. Unspoken.