Misunderstood

Living in the moment. Not being captured by the memories of the past. Not worrying about what might happen in the future.

It’s advice that is easily misunderstood as: don’t worry, relax, whatever has happened has happened and you cannot change it, whatever will happen will happen and there’s nothing you can do about it anyway.

I think it means: accept the past with all its memories full of beauty and terror; try hard to do what is right; but don’t despair nor blame yourself if the outcome is not what you would have liked it to be.

Living in the moment does not mean that you should forsake your precious memories nor does it mean that you should stop trying to make the world (or even a minuscule part of it) a better place.

Living in the moment, being grounded in yourself, “serving God and not mammon”, means finding inner and outer peace, it means hard work and constant effort, it means enjoying life, having fun, pushing boundaries.

It’s what Pádraig has been doing for five years now. Each and every day he has taught me how to live. I short, small, slow lessons so that I could stay with him and would not be lost on the way.

I want to share all the practicalities around life with a severe acquired brain injury, the fight for medical care, the fight for social care, and the fight for rehabilitation. But as important all these things are, the most important lesson is that none of us can live without the others, and never will. It is the love and the care

For Thousands of People

It’s late and I am tired. The thoughts going through my mind are reflecting a busy day. Sounds like any other day. For thousands of people.

It wouldn’t have been the kind of day I’d have picked had I had a choice. But then, most days aren’t. For thousands of people.

Trying to cope with life and living, making the best we can of it, shedding tears and sharing laughter, fighting for justice. Is the daily reality. For all of us.

 

Joy

Wednesday is music day in St Patrick’s College. At lunch time, they showcase the huge skills and incredible variety of music that is taught and studied at the college. Today was Blues day. It was 45 minutes of spectacular playing. To my untrained ears, this was a truly professional session. And Pádraig enjoyed it as much as I did.

Equally professional and equally spectacular was Pádraig’s music therapy session in the afternoon. It was all ‘rattle and drum’ (to quote and slightly adapt our friends from U2). Here was Pádraig beating a drum with his left foot (and later with his right foot too) and rattling the bells with is hand. In rhythm  and harmony.

Today was a good day. Full of music and craftsmanship. And rhythm and joy.

Idealistic

With both eyes wide open!

Working the arm trainer he was never supposed to use.

I had an interesting conversation today about ethics, right & wrong, knowing it, doing it, what to do about it. The other person saying ‘when I was young I was very idealistic”.

Have you ever asked yourself whether it is worthwhile to stay, if not young, then at least idealistic?

Or would that be stupid?

History

It’s a history day today. For different reasons. All involving Germans.

It’s the Armistice, of course, that dominated the news today. Ceremonies all day long. I had to think of my grandfather who had been shot and a bullet lodged in his lungs during WWI. No idea how he had survived. Neither him nor anyone else in the family really talked much about it.

And then, Borussia Dortmund beat Bayern München in an epic match today, 3:2. Borussia fans even sang the Bayern ‘anthem’ after the match. “Wir sind aus München, wir sind die Bayern. Wir sind die, die immer wieder feiern.”

The event most on my mind today, however, was the 5th anniversary of Pádraig and myself leaving Beaumont Hospital really early in the morning in an ambulance for the airport where an air ambulance was waiting to fly us to Hamburg. The physio in Beaumont had started in the middle of the night to prepare Pádraig for the journey and there was good wishes and holy water from the staff sending us off. Little did I know then that this was only the beginning of a long long journey.

If you feel like it, listen to one of the first anti-war songs, I Didn’t Raise My Boy to be a Soldier -sung by the all-male PEERLESS QUARTET.

Hesitant

A typical Saturday: a bit of shopping, a walk, a visit, meeting some friends (completely out of the blue), mass, dinner together watching Ireland winning against Argentina in rugby.

One of the nicest parts of today was the morning.

The house was completely quiet and the rain was lashing against the windows. It was one of those days that wasn’t really too sure about whether it should get going at all. Hesitant about starting up something new. It’s a new dawn, a new day, it’s a new life, for me (and I’m feelin’ good) – mmmhhh, not really sure about this one…

We don’t have these moments that often. There’s always something going on, always something coming up. Doing nothing feels like loosing out on the opportunity of doing something. Ticking off one item of this endless list of things that really have to be done. That list that doesn’t let me relax, only collapse at the end of a busy day, wondering whether my efforts were not all in vain because that list was never getting shorter, no matter what.

When we went to the hospital this afternoon to visit a well-recovering family member, we met two old friends and started chatting about what had happened in our lives over the past years, since we had last met. They had started up, with us, a new swimming competitive club, based in Dublin’s north inner city. Training sessions started at 5am almost every day of the week and went on up until 7am. And we loved it. Can you imagine?

And isn’t this a big chunk of what life is all about? Going out. Visiting people (especially if they are sick). Running into old friends you hadn’t seen for years. Catching up with their lives. Sharing our lives with them.

None of this happens when you’re sitting inside or, more seriously, lying in bed all day long.

Although the day started on a slightly hesitant note, it turned out like a new dawn, a new day, ia new life, for me – for us, and we were feelin’ good!r

Now, if you have a quiet moment, maybe on Sunday morning (or Saturday night:), go to “The Sky is crying“, turn it up, close your eyes, and let the song take you away to a different place. It really has that magic …

BCI

I had heard about it. i had watched videos about it. This week, it all became really concrete.

Brain computer interfaces – BCI.

Thinking ‘left’ ‘moves’ the sound being played via the earphones to the left. Thinking ‘right’ moves the output to the right of the earphones. Pádraig will have another seven session, practicing. If this worked…

Think of the possibilities!

SpeedOfLight

There is a huge number of exercises you can do on a floor matt. Pádraig is discovering a new one almost every other week. Check it out!

And while what he is doing is, by itself, pretty spectacular, what is even more amazing that he manages now, with the help of his physio and helpers, to pick up a new exercise in two or three weeks – what previously had taken months.

It all seems to happen at the speed of light rather than on a slow train coming.

Beautiful

I just had enough cash on me to buy one beer which we shared. The Arena was more than half empty and while we were drinking, very slowly, we could see people arriving. People we’d never see on ordinary days. But this was no ordinary day. It was a beautiful day.

It was a beautiful night, and like most beautiful nights, it came completely unexpected.

I was not supposed to go and jumped in when Pádraig was about to leave and the person who was supposed to go with him could not make it.

I had seen U2 decades ago in Croagh Park, Dublin’s super-sized inner city stadium. This was The Point, or the Three Arena as it’s now known, and the setting was spectacular. Nothing like anything they could have ever done in a stadium. It was almost intimate.

But apart from the out-of-this-world show and showmanship, it was the evening with Pádraig. We shouted our hearts out, at least that is what I felt. All the frustrations and annoyances and pressures disappeared into the night.

“You don’t know me, but I would like to buy you a drink” was one of the magic moments. Which led to us having our second shared pint. At times, Pádraig’s eyes closed, but only for moments. Never have I seen him staying awake that long and being alert and interested over such a long period.

Last time we were in The Point, for the Kodaline concert, just after Pádraig had returned to Dublin, he could not very well take all the noise and was completely exhausted half way into the concert. There was no sign of this last night. It was magic. It was beautiful. And it was Pádraig’s company that made this the best night I’ve had in a long, long time. And I think he thoroughly enjoyed it too.

This is life. This is being at the helm of the Dreamboat. One Life on a Beautiful Day.