We went down to the Liffey today to one of the many sea swims happening in and around Dublin during the summer, in preparation of the great Liffey Swim in August. Pádraig used to swim them. I tried two (gave up trying the first, and was pulled out trying the second:). One of his sisters has been swimming a few this year but this time was the first Pádraig came to support her. Quite a few people recognised him and came over to say ‘hello’ and ‘good to see you’!

There must have been some magic in the air today. See what happened.

For the first time, she won the swim.

Looks like Pádraig will have to go out and support her more often:)

Sitting at the kitchen table, with my head almost hitting the keyboard. Time to go to bed. Hope you enjoy the pictures as much as I o!!!

There was a tranquility in the garden, a relaxed mood this late afternoon, when we sat outside with Pádraig. And when his carers arrived to get him ready for bed, there was laughter and a bit of banter, bringing a smile to Pádraig’s face. It was a first sign of some level of sustainable ‘normality’.

Someone wrote to me the other day saying that they ‘felt’ the other story, not told here, at times. They are right. When I started to write this blog for Pádraig’s and our friends, it was a different story. Then, I did not feel scrutinised and exposed to the risk of stressful consequences. I would like to share what is my own personal truth of what has been happening to Pádraig, how this affects him (as I see it) and myself. How we are trying to get the best possible services for him. How so many people are helping us sharing their time, ideas, energy and love. But I feel the “Scheere im Kopf” getting bigger.

An Soal has published an ad on the website of the Irish Society of Chartered Physiotherapists for a senior physiotherapist (neurology) with an application deadline of the end of this month. If you know anyone who might be interested, please let us know!

“And the people all said sit down, sit down you’re rocking the boat / And the devil will drag you under, with a soul so heavy you’ll never float / Sit down, sit down, sit down, sit down, sit down / You’re rocking the boat.” Don Henley

There is a brilliant article by Salmon Rushdie in The New Yorker of which I lifted the reference to Don’s brilliant song, as well as the following few paragraphs. Sure, why not – lifting stuff from others is the in-thing these days. Here it goes.

At its most effective, the censor’s lie actually succeeds in replacing the artist’s truth. That which is censored is thought to have deserved censorship. Boat-rocking is deplored.

Nor is this only so in the world of art. The Ministry of Truth in present-day China has successfully persuaded a very large part of the Chinese public that the heroes of Tiananmen Square were actually villains bent on the destruction of the nation. This is the final victory of the censor: When people, even people who know they are routinely lied to, cease to be able to imagine what is really the case.

Even more serious is the growing acceptance of the don’t-rock-the-boat response to those artists who do rock it, the growing agreement that censorship can be justified when certain interest groups, or genders, or faiths declare themselves affronted by a piece of work. Great art, or, let’s just say, more modestly, original art is never created in the safe middle ground, but always at the edge. Originality is dangerous. It challenges, questions, overturns assumptions, unsettles moral codes, disrespects sacred cows or other such entities. It can be shocking, or ugly, or, to use the catch-all term so beloved of the tabloid press, controversial. And if we believe in liberty, if we want the air we breathe to remain plentiful and breathable, this is the art whose right to exist we must not only defend, but celebrate. Art is not entertainment. At its very best, it’s a revolution.

We rang the office of a therapist today. The receptionist took our message. Then she said that she just wanted to check our phone number. (087) 981 8219. She had tried to ring that number several times but couldn’t get through. (087) 981 8219 isn’t our phone number we said when the receptionist interrupted and asked how we could repeat that number so easily, if it wasn’t ours? No idea, although it sounded familiar, it defenitely wasn’t ours.

And then it hit us like an earthquake of the highest scale followed by a tsunami. Of course, several years ago Pádraig had been a patient there. When he could make and confirm his appointments himself. When he could use a mobile phone and leave his number. His number. It was a small detail. With a huge effect after a difficult day.

We now have to make his appointments. We have to ring. We leave our number. We are his voice. We explain that he is fighting so hard to get better. That he is fighting the fight of his life. A fight he almost lost a few times over the past three year. A fight he so desperately needs to win. A fight for which he needs all the help he can get. A fight we will fight for him, no matter what. Even if it means the beginning of a revolution.

“It is time for change. It is time for a revolution in rehabilitation.”  – Not my words but those of the person appointed by the Government of Ireland and the HSE as the National Director of Clinical Strategy and Programmes, Dr Áine Carroll. (Irish Examiner, 03.02.2011)

Lando: I had no choice. They arrived right before you did. I’m sorry.
Han Solo: I’m sorry too.
Star Wars: Episode V – The Empire Strikes Back (1980)

While Lando apparently did not (they did arrive before Han Solo, after all), you do. Have a choice. You can decide how you’re going to answer the Ultimate Question of Life, the Universe, and Everything. As we even have the question now (thanks to someone who identified himself as the ‘Oisín’): “Whatcha gotta do in life?”, you have no excuse for not making your mind up about the answer. Is it ’42’? Or is it ‘Gotta keep it rollin’? – It’s up to you and no-one else to make that decision.

Pádraig is doing really well starting to make noises. Not just any noises at any auld time. But noises appropriate to the situation (at least from his point of view:). It sounds like comments at times (big ‘sighs’ at some senseless comment I made, for example) or ‘calls’ when he is uncomfortable during the night, or when he wakes up in the morning (at 6am:). He also has a different routine now, with a bit more regular scheduled exercise, standing, moving his arms, moving his hands, moving different items with his hands. At the same time he keeps cycling the MOTOMed, almost always in first gear and then, for five minutes, even in second gear. Today was the first time I showered him with one of his carers which worked out really well.

Tomorrow, we’ll have a meeting with two HSE managers. A gardener will check the weeds and some other stuff. The builders will be back fixing things. Another busy day. We have a choice. And we gotta keep it rollin’! That’s what I’ve learned from Pádraig. And you have helped me more than you’ll can ever imagine. To keep it rollin’.

 

Thanks for voting at last night’s first ever poll. Having carefully reviewed the votes, all two of them, it seems that there is a tie between the sax players at 3:28 and the first ever street dance in a studio at 7:32. 50/50, so to speak. – We desperately need another vote – either a third one or, sure why not, another one! You might have got it wrong the first time. Happens all the time! Just look around!

What really surprised me though last night was the disagreement from the other reader (the one who didn’t vote) about the answer to the Ultimate Question of Life, the Universe, and Everything. He insisted that a writer (someone called Douglas Adams!?)  assisted by ‘Deep Thought’ (who came up with that name???) was right when he declared the answer to be ’42’. Worse, he insisted that this man had even found the question!

‘Deep Thought’!? – Come on! There’s nothing ‘deep’ about this, except the abyss.

The abyss we’re headed for in this world where ignorance and stupidity are taking over. Just look around you. If people come out with statements like this willy nilly, does anything surprise you anymore??? Anything?

42.

Really? I mean, you can’t be serious???

PS: The sad truth is that some people are. Seriously serious. Even if it only makes sense to them.

This is just such a great line. From such a great song.

In case you haven’t seen it, watch the Chattanooga Choo Choo (from 1941) with the full Glenn Miller Orchestra, topped by the Nicholas Brothers’, Tex Beneke, Paula Kelly and the fab Modernaires. And then tell us which scene in your opinion is the most outrageous one!

 

Gotta keep it rollin’ is such a great line because it captures the meaning of life (no, it’s not 42 – as the Hitchhiker’s Guide to the Universe is erroneously reporting).

Another beautiful day. Check out the lads on the beach in Dollymount. Walking on water (with their bike:). Where else in the world would you want to be on a day like this?

Shovel all the coal in. Gotta keep it rollin’.

PS: Thanks for the great company in Dollymount today, the brilliant home made ice cream for Pádraig, and to the two visitors who came in tonight to see Pádraig. We had a full house and that’s the way he likes it to be. Living. Life. In company.

He didn’t win it. A good friend brought it to the house for Pádraig to see what one of his ‘old’ pals has been up to. After the Leinster win, just a couple of matches away from the All Ireland! How cool is that!

It had slipped my mind during the week, with so many things happening. It has been one of the most difficult weeks, one where I questioned what I was doing here. What we were doing here.

Next week, we’ll have a meeting with the HSE, following up on the shattering phone call of last week. What will be the outcome of that meeting?

I don’t think, I have met anybody who wouldn’t have been surprised and appalled about the lack of neuro rehabilitation we have encountered. What you would expect is the ‘system’ offering Pádraig every possible opportunity to recover whatever he can recover with the best possible support. They tell us they don’t have the resources. They tell us this is the way the system works.

Is anyone up for change? Not pity. Real, radical change. Because that is what Pádraig and so many others like him need. Now. They have lost enough. It must be their time now to win!

I’m on my own with Pádraig this weekend. No carers (none available).

Panic stations?

To the contrary.

Here is Pádraig moving a snake across the screen using his left eye.

 

Maybe inspired by that colourful snake, I’ve been dreaming for the first time in a long time.

Could Pádraig and I finish the camino we started over a few years before the accident? The last, say 100km? Would the ground be ok for a ‘standard’ wheelchair?

Should we go to the Fleadh Cheoil in Ennis?

What would it be like to be in Leitrim for a while? Darkness in the night. Incredible sounds and smells during the day. And the nothingness of land around the cottage lost in time.

What if our day was not structured by the arrival and the departure of carers we cannot leave alone with Pádraig, therapists costing a small fortune (the HSE have stopped physio for Pádraig), and deliveries of supplies?

What if we were on the road to somewhere? Moving to different places? Staying for a couple of days and then moving on? Exploring the world?

Leaving the panic stations where we’re looking for something that ain’t available. Instead floating down the stream. On the Dreamboat.

I’ve been learning English through music. I’ve never stopped. When I finally understand the lyrics of an English-language song, its like as if I was listening to the song for the very first time.

I have a dream, a song to sing
To help me cope with anything
If you see the wonder of a fairy tale
You can take the future even if you fail
I believe in angels

Good night!

When will we ever learn?