I had hear of Feldenkrais but didn’t really know what it was until a Feldenkrais ‘master’ today worked with Pádraig on improving the connections of his body with his brain. I couldn’t find any reference of it being used to help survivors of brain injury, but the approach makes sense. Whether it works, we don’t know but will find out over time, I suppose. Pádraig seemed to have enjoyed the session today.

In the morning, we had been at the funeral of our friend, Gabrielle. One of the readings was a section of Ecclesiastes (3) The Byrds had used for their song “Turn, Turn, Turn”: “To every thing there is a season, and a time to every purpose under the heaven”.

I had a meeting with an architect who will drive the development of the An Saol premises in the Players’ old tobacco factory. I’ve been thinking about a name or the building and thought that “FABrík!” would be a great name for this fabulously funky tech playground that will support survivors of severe ABI to recover their function.

What do you think?

Thursday, 30th of November 2017

The Parish of Our Lady of Dolours

Mulled Wine, Mince Pies, Hot Chocolate and Marshmallows

ADMISSION FREE

With donations in aid of
CARING FOR PÁDRAIG
gratefully accepted

Our neighbouring parish decided this year to organise a raffle at their annual Winter Songs by Candlelight to support “Caring for Pádraig” which is so incredibly generous that I honestly do not know what to say… It’s the Parish where we got married a few years ago and it will be a great honour to join the Parish on that evening for what, no doubt, will be a brilliant night of song and good company.

Sadly, we also had some bad news. Last night, Gabrielle Carty, one of our longest family friends and former DCU colleague, died. We have so many good memories of brilliant times spent in her company, memories that will always stay with us, as will she herself!

When the An Saol Foundation applied to the Revenue Commissioners to be registered as a charity, the foundation was told to register with the Charities’ Regulatory Authority (CRA) first. When we did that, we were asked to fill in a questionnaire which had to be amended several times until it finally met the requirements of the CRA. When we then applied, again, and many months later, to the Revenue, we were asked to modify part of the information we had provided and which had been accepted by the CRA and check with the CRA whether they were ok with it. Once that’s done, we need to make a whole bunch of internal changes. And then, finally, we hope to have all the magic numbers, the CRA and the Revenue charity numbers, together.

Sounds boring, complicated, complex, and repetitive? – Yes, it does. And it is.

About two weeks ago, a report was published and widely reported on in Ireland stating that almost half the people in the country do not trust charities.

It also found that 83% of people think charities will have to be more transparent about their spending, while 60% said wages in the charity sector are too high. About two-thirds of respondents, 64%, say there are too many charities with similar functions and roughly the same proportion (68%) say such charities should merge. Broadly, the same share of those interviewed (68%) think charities should hire the best professionals available. However, only 41% feel that charities should pay competitive salaries for these professionals, while 64% of people believe most of the work carried out by charities should be done by volunteers. (The Irish Times, 26 October 2017)

Which explains why the authorities are making it increasingly difficult for organisations to register as a charity.

Sounds boring, complicated, complex, and repetitive? – Yes, it does. And it is.

Finally, something that is the antithesis of boring, complicated, complex, and repetitive. Pádraig’s new assistant is doing what I had heard about so often and always meant to do, i.e. making the service of daily health care and personal hygiene part of his daily rehab effort. While I often ask Pádraig to help me by lifting and arm, a foot, or a leg, I often do not wait long enough to give him a chance. Since we have started to wait, to be more patient, and to give him a real chance dressing or eating or washing will never be the same. It will only happen with his determination, his help, and his support.

Sounds marvellous? – Well, that’s because it is!

The person who suggested, four years ago, that I should start writing a blog about Pádraig’s way to recovery in Germany also suggested to focus on the positive aspects, on things others could learn from, on ideas that could help others in a similar situation. Four years ago, we were planning Pádraig’s transfer, in an air ambulance, to Hamburg. We thought we’d be there for a few months until Pádraig would have recovered. Ever since we got there, four years ago, five days from today, I’ve written about his travels, for the lack of a better word, through the German and Irish healthcare system, about his setbacks, but above all about his amazing fight for life.

Sitting down, every evening, to write a few lines or notes, trying to capture experiences, despair, joy, hope and hopelessness, the ups and downs of life, has been therapeutic, in a way. It’s an almost unbroken daily record of nearly four years now that I started to keep his friends in Ireland in the picture once he had left for Germany.  Over time, it became much more than that.

I discovered that there are readers with varying interests. I discovered that some readers were even reading this to make sure I hadn’t written about them. But above all, I discovered that there are people from all over the world who have been with Pádraig almost since the moment his accident happened. People without whom he and I would not be where we are today. Incredible friends. Dreamboaters.

If you do something for almost four years, you’d think it’d become a routine. Or a drag. Or hard to keep doing. After all, what is it in a day that is worth talking about? Day after day?

So far, routine hasn’t arrived yet. Every day is so different and so unique, so exciting, so nerve-racking, so happy, so frustrating and infuriating, so full of hope and promise that the biggest problem I face when I’m trying to write is exhaustion. And the limits of  what I can write about.

Pádraig keeps fighting on. He is still good humoured and is trying so unbelievably hard to recover from his accident. He inspires and motivates so many people in difficult situations, some not un-similar to his own, to keep going, to never give up, to defy dire predictions by the ‘experts’.

One day, I’ll be writing about him talking and walking, about taking control back of his life. One day. When today will be a distant memory.

A Sunday afternoon by the fire catching up on the news of the week with Pádraig. Re-playing some of the week’s interviews on the telly, like that with Irishman Ibrahim on last Friday’s the Late Late Show, reading the tweets about it in parallel. And watching an episode of RTÉ’s new Salon Confidential, according to The Irish Times the station’s attempt to increase its under 35 audience. I can tell you: it’s worth watching even if you’re over 35 and want to find out what those young people are up to these days. And then contrast this with the emerging scandal of (over 35) Michael Colgan’s alleged remark to one of his employees as reported on tonight’s news.Earlier in the day, Pádraig and I had listened to German Radio Station Deutsche Welle with a report on eco-holidays on what was presented as one of the world’s most beautiful island. We checked out what they were talking about on YouTube and that island in the Philippines called Palawan. Never heard of it. But it does look incredible.

There are tons of things we’ve never heard of. Things that are part of other people’s daily routine and life. So lets keep exploring!

Someone told me, I tried to find it, and am still looking: apparently, Ireland is going to be one of the coldest countries in Europe tonight and tomorrow.

To be honest: I’d find that hard to believe. Dublin colder than Warsaw? – Though these days, anything is possible.

So just in case snow will close down the country tomorrow, we went out for a walk today, down Dorset Street, passing by Parnell Square and the Municipal Gallery, crossing through the Ilac Centre, into O’Connell Street, quick look into one of the last Guiney’s shops on Talbot Street, squeezing in between the Pro-Cathedral and the Department of Education towards home. – I know, a long list of streets and places, and yes, when we came back the first thing we did was warming up again. I was a really good, long walk and I know that Pádraig enjoyed the buzz on the streets.

Weather permitting, that’s what we’ll do every Saturday afternoon: going into town, going into museums, going up the mountain, going down by the sea – whatever it’ll be: it’ll be going somewhere. We’ll keep going. No matter what!

There are times, when what the news, the entertainment, the radio talk, the talk shows on TV all seem so ridiculously redundant, worse: they sound like manipulating propaganda with little or no relationship to what is really going on.

Ireland seems to be out of control, meaning: the health system, the police, housing, banking, building, the church… you name it, they all seem to be rotten to the ground.

Whether this is so or not, who knows. But this is what the media make us believe. And there is no visible change for the better. Another 400,000 false breath tests were ‘discovered’, the health system will be more challenged than ever before this winter, the banks apparently haven’t done anything wrong, and housing problems are getting worse by the day.

There are no absolute ever-lasting ethics. Yet, we need to know what is right and what is wrong and we need societal consensus about it. And then we need to deal with those who break that consensus.

By contrast, today we had such a good day that I felt, for the first time in a while, that we are getting somewhere good. Pádraig had fun, really collaborated and got better during his physio, we went out for walks, had good food and a glass of wine. We were still talking about the regular Thursday visit by his friend who yesterday had brought not just biscuits (and flowers for Pat:) but also homemade pumpkin soup and loads and loads of good humour and laughter.

Always look at the bright side of life.

I remember those days when I was reading a book and bit by bit, a whole new world opened up in my mind. When, in my imagination, I entered into a different reality. One that someone described but one I created in my mind. People living in a different reality today, live in Facebook-land or Instagram-land. They walk the streets likes zombies, locked in their own world, head down, eyes firmly fixated on a small screen. Germans (ah, Germans!) and Dutch (mmhhh…?) are so concerned about their fellow countrymen turned zombies that they have installed traffic lights on the ground so they couldn’t be missed – even if you’d never look up.

The lesson?

If you don’t get the attention of those to whom you want to signal some important messages because they just choose to look the other way, you change tactics.

You put that message right in their way where they can’t miss it, where they quite literally stumble over it.

Pádraig keeps doing well, his head control is getting noticeably better and his reaction times too. It will take some time, but one day he will not just be able to sit in a chair all by himself, he will also be able to walk, even if that will require some level of support.

Talking about support. When I talked to a rehab consultant today, I nearly cried, realising the many opportunities we missed, realising that we have spent so much energy and effort and time trying to convince the ‘professionals’ that Pádraig requires ongoing rehabilitation.

The world’s longest running conference on Virtual Reality, VSMM, today welcomed Pádraig and myself to give a talk, together with Prof Lizbeth Goodman of UCD’s SmartLab, at their 26th annual conference taking place this week in Kerry, Dublin and Belfast. We highlighted our collaboration and plans to use virtual reality for survivors of severe acquired brain injury and the people supporting them. Pádraig gave his first international conference speech using the Tobii Dynavox.

Talking about our collaboration with Prof Goodman… RTÉ will start broadcasting a new series on Mondays, starting on 13 November at 20.30, called “Ten things to know…”. It will feature Prof Goodman and Pádraig flying a drone (!) on 20 November.

Exciting times and a testimony to what can be achieved if we work together starting to make the impossible possible.

Mark Pollock said at today’s event that sometimes we choose challenges, sometimes the challenge chooses us. It’s what you do about it that counts. History is full of accounts of making the impossible possible. Check these and other examples out here:

• 1876: “The Americans have need of the telephone, but we do not. We have plenty of messenger boys.” — William Preece, British Post Office.
• 1889: “Fooling around with alternating current (AC) is just a waste of time. Nobody will use it, ever.” — Thomas Edison
• 1959: “Before man reaches the moon, your mail will be delivered within hours from New York to Australia by guided missiles. We stand on the threshold of rocket mail.” — Arthur Summerfield, U.S. Postmaster General.
• 2007: “There’s no chance that the iPhone is going to get any significant market share.” — Steve Ballmer, Microsoft CEO.

One day soon, we will wonder how anybody could ever have thought, never mind said, that persons with severe acquired brain injury couldn’t and shouldn’t be supported with dedicated rehab programmes for the rest of their lives.

The blood transfusion bags had disappeared. The moment we needed them most, someone had taken them away. To who knows where. Those bags were impossible to get. Sweet, heavy blood. No wonder they had sold out in Lidl the moment they arrived. There’s no doubt in my mind that we would have won the best costume competition at this evening’s Bram Stoker lecture in Trinity College – especially given the competition on the night – had we turned up covered in blood and sucking more supply of the sweet red stuff from Lidl’s specially prepared transfusion bags. Sadly, some young one with a face painted white and another one with a ‘funny’ dog hat got copies of David J. Skal’s, tonight’s guest lecturer, new book Something in the blood – the untold story of Bram Stoker: the man who wrote Dracula – a rather long title, making really sure to be sure that even the biggest ignoramus gets the point of the book:)

But – we had a blast anyways. The organiser of the lecture came over to welcome Pádraig back to TCD. He told me that he had been in this theatre for his history lectures and that he had really learned a lot here (not sure whether I believed the whole story, to be honest). Be that as it may – we decided that we’ll be back here soon. Going out in the evening, smelling the petrol in the streets, listening to interesting talks, seeing cool people, being scared by witches, pirates, and vampires – isn’t that what life is all about?