WinterSongs

So, finally, here are the pictures from last night’s Winter Songs by Candlelight in Our Lady of Dolours, fundraising for Caring for Pádraig.

There are pictures of the legendary Sam Maguire Cup with Pádraig and his friends, a few pictures of Pádraig’s former child minder’s husband who managed to get hold of a Dublin jersey with 18 signatures of this year’s All Ireland winning Gaelic football team, of friends we hadn’t seen for some time.

Songs

It’s around the midnight hour and I’m just settling down after what has been an incredible evening with hundreds of people at the “Winter Songs by Candlelight”. In my life I haven’t seen anything like it. From the music, to the reflections, readings, poetry and an astonishingly decorated church to the new Parish centre, a huge raffle, the auction of a signed Dublin football jersey, and food and drink of all kind. The highlight for those taking pictures was, of course, the Sam Maguire Cup. And while there are many really good pictures from the night that I will upload tomorrow when I’ll have recovered from this extraordinary night, there is one picture I want to share tonight showing Pádraig and some of his really good friends – and Sam Maguire!
In my mind, this is what I’d call a classic!

End

Here is the bad news: whatever I do – my life will end. One day. In the meantime, the one thing I can do is to make the best out of it. Enjoy what life offers, spend time with the people I love, and be kind to others. Find my mission in life.

Easier said than done, says you.

As always, Leonard Cohen got it when he remarked, “The older I get, the surer I am that I’m not running the show.” But – I can pick the part. my role in that show. Will I be the sad guy, will I be the joker, will I be the reasonable, the angry, the happy, the lonely, the party-goer?

Bad things will happen in my life. (They have.) But even when that happens, I can run along the sea, watch the sun coming up over the horizon and the frozen ground. And feel blessed. I will come across horrible people. But when that happens, I can decide that they will not define me, that I will acknowledge them but not engage; instead, I can decide to spend time with people I love, with people who love me. I will come across people who need help, a kind word, a smile, a ‘how are you today?’ and I can decide to offer that to them; and discover that when I’m looking at their faces, I am looking in a mirror, I will see a kind, beautiful face with a lovely smile and a sparkle in the eyes.

Pádraig managed to control his face, his lips, his tongue today when his speech and language therapist today asked him to show her how to make a narrow “O” and a broad “I” with his mouth, to move his tongue as fast as he could from left to right, between his teeth and lips. He tapped his feet to the music during Music Therapy, and made a few loud, prolonged sounds. At the end of the day, he was proud of what he had achieved and he had every reason for it.

If you are free tomorrow evening, join us in Our Lady of Dolours, in Glasnevin, at 7pm, opposite the main entrance of the Botanic Gardens for a fabulous night of Winter Songs by Candlelight, followed by mulled wine, mince pies, hot chocolate, and marshmallows – and an incredible raffle. All proceeds will go to Caring for Pádraig, allowing us to provide Pádraig with the therapy he needs to continue to make progress. The first of Advent is around the corner, so is the promise of light, the star that will lead the way to new life.

Rumour have it that the Irish Minister of Finance (!) has made a donation. Another first! And very gratefully received!

Sam Maguire

Like all real heroes, Sam died of “a broken heart and penniless”, in 1927 aged 49. He was a successful Gaelic footballer and became Chairman of the London County Board, as well as a trustee of Croke Park. Apparently, he recruited Michael Collins to the Irish Republican Brotherhood in 1909 and for many years was one of Collins right hand men. Like many Irish heroes the legend started after his death. The Sam Maguire Cup, probably the most famous trophy in Irish sports, was designed and presented to the Gaelic Athletic Association in 1928 in his honour and after his death in 1927.

Why is this all important?

Because this coming Thursday, rumours have it, the world-famous Sam Maguire Cup will appear at “Winter Song by Candlelight” organised by the Parish of Our Lady of Dolours, Glasnevin, for “Caring for Pádraig”. – Another reason to join us at 7pm this coming Thursday! (AND: there will be a fabulous raffle with free mulled wine, marshmallows and all sorts of other seasonal goodies!)

Today I had a terrible encounter with the most incredible inconsiderate, heartless person, the kind of person I didn’t think even existed. I was shaking afterwards and it took me the best of half an hour to find my composure. It reminded me that there is only one strategy to deal with these kind of people: stay away from them, do not engage, at all at all, and stay calm, always calm. It was so bad that I almost feel a weird sense of gratitude to that person for helping me to learn this invaluable lesson.

Today, I also has the most delightful, fantastic, incredible half an hour with one of Pádraig’s carer and the man himself, walking on water – well: in water, though it felt, to me, he was right on top of it. He is struggling with his right leg, but he was moving his left leg forward, he stretched it, and he stood on it! On the side of the pool, he held on to the bar, with both hands, and he stood without any support whatsoever, except for me supporting his head a little with one hand, for at least a couple of minutes. It was another first, a new PB.

Worth the Sam Maguire!

 

Boredom

“So kann das nicht weitergehen!” – I’m sure there is a translation for this, something like “It can’t continue like this”, but, as is the case with many translations, this one doesn’t quite hit the note. A bit like an Irish friend telling me that there ain’t a word in the Irish language that quite expresses the sense of urgency in the Spanish word “mañana” – the English translation of this German expression doesn’t quite capture the sense of determination to stop what is going on and to change course.

What am I referring to?

On my macro level, the lack of official interest, the lack of responsibility, accountability, transparency, and, above all, ambition, honesty and pride, in relation to the rehabilitation of survivors of a very severe brain injury – this lack has to be turned into overwhelming support. On my micro level, Pádraig needs to be participating in life outside the house. I find it difficult to spend so much time here, for Pádraig it must be so much worse. We have to do more immediate things like cinema, concerts, museums, walks in the city, and start planning mid- to long term action, trips, journeys, adventures. The way it is at the moment feels like being trapped in a space that produces claustrophobia, like a straight jacket.

Yes, Pádraig is making progress, slow and steady. But a life making slow and steady progress needs jumps down into the unknown, explosions of colour, leaps into the thin air, blind dates with adventure.

Pádraig got easily bored and always looked for exciting, interesting, new stuff.

I’m beginning to think that all the stuff we think is difficult to organise, his care, therapies, rehabilitation, is easy in comparison to avoiding boredom.

PS: Tonight, Pádraig had mashed potatoes, beans and sausage. Apart from the potatoes nothing was mashed. We’d never thought he could eat beans and sausages just like that. A complete underestimation of what he can do. I can only imagine, how much nicer it must be to taste and feel the texture of the food, instead of everything being mashed or pureed…

Preparing

A few years ago, she lost almost all her possessions in a wild fire that gave her and her  husband 30 minutes to vacate their house. This summer was like a deja-vu when her chosen hometown of Napa just North of San Francisco was threatened by a huge wild fire, leading to forced evacuations and the closing down of her school.

Having spent a few days with us, one of our oldest common friends went back to the West Coast, the wine country. Last year, she had organised a huge welcome party for my co-cyclists and myself at the end of our 1000km ride from Hollywood to Napa, raising funds and awareness for severe acquired brain injury and An Saol. On the first day in months that the heavens opened, it poured, and the town was literally flooded!

She did, a few times in her life, what I feel at times I should be doing. Make radical changes. Leave everything behind and go where life is exciting. Stop talking about Alaska but pack up and go there. Stop fighting for miserable hours of therapy, stop explaining why a highly vulnerable non-verbal ABI survivor cannot be cared for by a non-experienced, non-qualified, non-track-record-holding taxi driver, stop writing letters and emails, stop making phone calls, stop pushing that rolling stone up the hill from where it will inevitably roll down again, and instead embarking on an exciting tour of adventure and discovery, going where no wheelchair has gone before, blowing our minds and imagination, having insane fun, experiencing the wonder that the world is, breaking out of this self-imposed locked-in syndrome.

Isn’t all that Pádraig is doing training to prepare for this? Standing, turning, lifting. Cycling the MOTOMed, using it as an arm trainer and a leg trainer. Getting the circulation going. Brining up the oxygen. Keeping fit. Recovering muscles that you can loose in a flash and have to fight for to recover.

Getting ready. Preparing.

Essential

What would you do if the world ended tomorrow? What and who would you take with you if you were stranded on an island in the middle of nowhere? What is important, what is essential in your life, or for your life?

Whatever it is, there is this instinct to do everything, to do whatever is necessary, to survive.

The tragedy is that no matter how hard we try, we’re going to fail. At the end of all of our efforts is failure.

The essence of human endeavour is existentialism. Making the effort despite the certainty of the unfavourable outcome.

Pádraig was smiling a few times today because his sense of humour is there as it has always been. He has a way of smiling at things that are obviously not working out the way they are supposed to.

I think: he has a lot to smile about in this life in which nothing is working out the way it is ‘supposed to”.

I wonder about where we are and where we’re going. I’ve said so often: we’ll never give up, we’ll never give in. We’ll keep going, we’ll keep trying, we’ll keep fighting.

To the end.

Whatever

Juan is a good old friend of one of Pádraig’s good old friends. His name is a bit of a give-away: yes, he is Spanish originally. Which is important. Juan is also a cook. Which is equally important. That’s as much though as I know about him. Which is not that much. Though it is probably more than he knows about us and what his perfect, freshly prepared Spanish food has done for us and especially for Pádraig.

Here’s a bit of a selection of what Pádraig’s friend brought along tonight.

We briefly contemplated it but just couldn’t do it: mincing this perfect taste and these perfect textures fro Spain. So we gave it to Pádraig as it is. And guess what – it wasn’t a problem for him whatsoever!

On one hand, this demonstrates the obvious: Pádraig is getting really good and so much better with eating and drinking. On the other hand, it demonstrates that if something is nice, if you’re motivated enough to do it, to succeed, you can do it. Whatever it is.

O’Bama

“No, you can’t” – Someone should really have the guts to say it. Forget O’Bama. Forget those who believe they can do whatever they like. None of this “Is féidir liom” stuff. They can’t. No they can’t. And we should tell them in no uncertain terms. I mean, just because you can get away with it, it doesn’t mean “you can”.

Tomorrow week, 7pm.
If you are in Dublin, join us in the Glasnevin Parish of Our Lady of Dolours for Winter Songs, followed by mulled wine, minced pies, hot chocolate and marshmallows – and a huge raffle in aid of Caring for Pádraig!

Finally, and coming back to the beginning, the need to say “No, you can’t” – what would you tell someone who had a contract to work 37 hours per week in the public service but only worked 13, spending the remainder of the time working with private clients and charging them high fees?

Exactly! You’d give them the slightly adapted O’Bama quote: “No you can’t”.

And fair play to Irish Minister of Health, Simon Harris, to call this practice “immoral“.