Playback brought back a bit of anger this morning. (In case you don’t live in Ireland or you don’t know the programme: it’s an hour of the ‘best’ of the past week’s RTÉ Radio One programming.) During the week, an old lady rang Joe (Duffy) – probably the most popular phone-in radio show in the country.

She rang Joe because she is in a nursing home. A nice nursing home. The food is ok. The people are treating her ok. But, it’s not the place where she wants to be. She wants to be at home. And she was told that she can only leave the nursing home if her daughter signs her out. Something that the daughters is not doing. This lady appeared to be mentally fine and she reassured Joe that she was physically fine too. Now, how on God’s earth can a person be held in a nursing home against her will without the owners being brought to court for false imprisonment? I felt what the Spaniards call, very aptly, deep ‘rabia’, real anger. What kind of world are we living in?

Then the day got busy. In a really good way. No carers today. None of the ones Pádraig has do Saturdays, and only one of them does one hour on a Sunday. The upside of this is that the days are not structured by the carers’ timetable, but by what suits all of us: a lengthy breakfast, easy, nice long stretches, a lovely lunch, a visit with Pádraig’s grandaunt, calling in to a cousin’s (twice removed?) confirmation family party, a film back home during dinner.

In a way, life is literally hopeless. There is only one outcome. But there are good moments. Moments that make Pádraig smile. Like when he met his grandaunts today. Maybe he remembered one of them leading the whole family up the strip in Las Vegas many years ago. Really remarkable women! Early Dreamboaters!

Pádraig meeting his grandaunts today

There are days like this when everything falls into place like the flick of a switch. When it’s not always raining…

So here we go, heroes or ghosts. One man’s mood can break another man’s soul. Or am I just too cynical for my own good, too scared to say, we’ll get there if we should. And you know, you know, it’s harder than it looks. It’s harder than it looks, but I know it’s gonna take a lot of time and a little bit of luck.

And it’s beginning to happen, it’s beginning to move. I’ve seen a reaction, yeah I’ve watched us improve. And you could say we don’t care or that we don’t believe but this is what we’ve got and there’s nowhere we’d rather be.

I ‘borrowed’ that:)

Well, it’s a song I re-discovered when Pádraig’s music therapist was singing it for him and I managed, for the first time, to understand the lyrics. She asked Pádraig whether he was sad after she sang the song to him and he said “yes”. And she said “yes, it’s kind of a sad song, even the music is kinda sad”. I was ready to jump up and shout “no, no, no! This is *not* sad! Can’t you see: It’s beginning to happen! It’s beginning to move! I’ve seen a reaction, yeah I watched us improve!”

I could see that Pádraig looked a bit sad alright but didn’t think it was because the song was sad but I’d say because he must have remembered the happy times when he was singing the song at the top of his voice with the Coronas at a concert or a festival. So don’t grow old forgetting who you are, a simple goal could get you very far. (I borrowed that line too, from the same song:)

When I looked it up on YouTube it was curious to see that the Irish version had more than five times the number of hits than the English version. Maybe I should do (with Irish) what I did when I was learning English: singing songs in Irish, reading the lyrics, then learning the songs off by heard, and slowly understanding what they are all about…

Someone once told me that in Ireland, things come in three (like in the Trinity). So today, I’m adding music to travel and communication – three things to focus on for Pádraig. Music is a bit like a smell: it instantly catapults you (back) to places and times and people – and brings back memories, the good ones, the bad ones, the sad ones and the happy ones. But this is what we’ve got and there’s nowhere we’d rather be.

The point of all of this is, I think: never, ever trade your heroes for ghosts. (Even when you’re growing old:) – Makes sense?

We were walking along the bridge and up towards the statue of Mary in Dollymount when we spotted the flowers, in November, growing amongst the stones, shielding the footpath and narrow road from the sea. In the most unusual of places for a flower to grow. Where is shouldn’t grow. Totally unexpected. (If you look closely, there was also an empty bag of chips – where it shouldn’t have been:)

Just shows that when you open your eyes and look around, not just focused on what you want to see, the most marvellous and beautiful things can appear in places where you wouldn’t expect them at all.

Tons of pictures. A set about the way to the graveyard on All Souls Day with Pádraig to visit his gran’s grave. Another set about some really engaging work today with Pádraig’s communications device, the Tobii Dynavox.

Here’s the way up to Glasnevin Graveyard from Iona.

Big Step up the footpath

There is no way to cross this road in a wheelchair without heavy lifting

Almost impossible to get up and down the footpath

Doesn’t look that insurmountable but it’s much higher than it looks

This is what Mr Zerban on WDR 2 German Radio called a “Marterstrecke”

It’s a ramp on a footpath!!!

Ramps on the footpath – why???

It’s maybe a 30 minute walk. But it’s got everything from near to unsurmountable really high up footpath’s that cannot be reached without heavy lifting to what amounts to high ramps crossing the footpath. It’s unbelievable. Add to that the fact that today was bin day and many of the bins were blocking the way for a wheelchair and you get the picture. It’s really hard, and at times almost impossible. to navigate Pádraig’s wheelchair up to and into the graveyard. If you were in a wheelchair on your own, it would definitely not be possible.

Next set of pictures is from the incredibly engaging work Pádraig did today with a speech and language therapist (SLT). So far, the options on his Tobii Dynavox were all geared to tell people about what he would like to drink or eat, or how he felt. Today it was all about asking questions and getting others to tell him about how they are doing.

Opening and Closing Questions, as well as about the day’s schedule

How is: work/study/everybody?

What’s the plan?

Closing questions

It’ll all be refined a bit more – but this was so interesting to put together that Pádraig was fully engaged for two hours. Actually, it was him who put all this together – yes, prompted by the SLT (and by us a bit), but he was telling us what he wanted to have in there and what not, which pictures he felt worked best and which not. It was a full two hours that he was fully engaged, an absolutely exhausting enterprise but so important to him that he really gave all he had.

Next item we need to talk about is travel and exploring:)

What was that again about concentrating on the important stuff? It really does work!

Here’s good auld Brendan Behan trying to chat up a girl on the Royal Canal, in the Dublin evening sun of a lovely All Saints evening.

Though she isn’t paying him much attention, it’s clear that the whole setup is set up this way to show that it’s talk that brings us together, that allows us to be social, to share our experiences, lives, convictions, opinions with each other.

I know few people who have opinions as strong as Pádraig. And the more I’ve become aware over the past weeks of his awareness, the more I’ve felt the imaginary wall that surrounds him and prevents him from sharing his opinions, his ideas, his wishes, his views, his feelings… with us.

And when we asked him what was the most difficult part of his journey so far, he confirmed that not being able to talk, to communicate, was the hardest part of the journey.

So here it is: we have to get Pádraig traveling and exploring again; and we have to do anything we can to allow him to ‘talk’ to us again, in whatever way and by whatever means.

It’s good and important to set clear priorities. Otherwise the important stuff gets lost amongst the noise of every=day life. Right?

Bank Holiday Monday. A quiet day. Got a visit from a friend who has a car converted for wheelchair use and we tried it out with Pádraig and his wheelchair. It’s just that little bit bigger than the Doblo that changed his life giving him great mobility.

One evening, I’ll write about what can happen to your job if you go on carer’s leave – and you don’t have to be in the cut-throat high tech business to experience that. I’m thinking of work because last Saturday, I received a phone call from a former PhD student of mine who had had his viva and will soon graduate with a PhD, expressing his thanks that I had believed in him and his abilities to get through those tough years of study. I had handed over his supervision to a colleague and together they managed to bring that student over the line. It was like a blast from the past. Nice to hear about his success, touched to hear about research and academic life…

I’m up late. From tomorrow, life will be different.

You know when you fundraise, you come up with an event or something you’re going to do. Like running an insanely long distance, or sky diving strapped to someone else, or climbing a mountain, or cycling across a desert… Then you tell all your family and friends that this is what you’re going to do, and ask them to support your fundraising efforts by donating money either directly or online. Finally, when the big day arrives you do this extraordinary thing, hoping that all will go the way you have planned it…

I think today was the first time ever, that I heard of someone do what he himself felt was almost impossible for him to achieve and then started a fundraising campaign:)  But it’s true. One of Pádraig’s really good friends today ran the Dublin City Marathon for the very first time. He crossed the finishing line within quite a respectable time – something he did not believe he could achieve. But he did. So now he is starting his fundraising campaign for An Saol.

Check out his fundraising page at bit.ly/AodhanMarathon.

I’m not quite sure why he thought he might not have been able to cross the finishing line today – when he is one of those people who never give up and who do the ‘impossible’ to achieve what they’re aiming for. He is a Dreamboater, someone who believes in mind over matter.sss

I had a very sad day today for some reason. But sure, I’ll get over it. Tomorrow will be another day: bright, friendly, forward-looking, exciting…

Tomorrow is the day of the 2016 Dublin City Marathon. For the first time ever it will take place on a Sunday and not the Bank Holiday Monday, making it easier for runners coming from abroad to participate. Participants will get a special commemorative Medal because of the 100th anniversary of the “rising”, the Irish Rebellion against Britain. For these reasons, the marathon sold out months ago, for the first time ever. When I eventually tried to register, all places had been sold. For the first time since I started running the year before Pádraig’s accident, I won’t be struggling to make it to the finishing line (it was never a question of time for me:).

But I have decided that my life will change. On Tuesday:) I’ll start training for the Hamburg Marathon in April. I will go to bed early. I will eat and live healthy. Starting on Tuesday. Really. I will also register for both the Hamburg and the Dublin Marathons. Really.

I also want to start planning a few trips with Pádraig. He said that he’d really like to travel. So we’ll start preparing. For the trip to Alaska. And a walk on the ‘camino’. I watched a group of Irish people walking the last 120km of the camino on Irish TV last week and I kept watching it to the bitter end (at around midnight) just to see whether the ground of that part of the camino would allow a ‘normal’ wheelchair to be pushed toward Santiago. It looked pretty promising but I’ll try finding out more.

Email from the Minister with special responsibility for Disability: he has made the An Saol Project one of his priorities for the budget being firmed up over the coming weeks. Have approached the Minister for Health as well, but haven’t heard back from him yet…

I wrote to Simon Harris, the Irish Minister for Health, today asking him for the follow-up meeting he had promised when we met some weeks ago. The health budget has been agreed, the health services plan is being drawn up, and this is the time to make sure the An Saol project gets funded. The project has also been submitted to the HSE and I had a meeting with them to discuss some operational issues – but a little attention from the government will do no harm, I’m sure.

There was another first today with Pádraig. A person working with him was working with his hands and his arms and Pádraig managed to lift not just his arms but both of his hands – including the more ‘difficult’ right hand. It is so fantastic to see him making this kind of progress, step by step, all the time, slow and small steps, but consistently improving.

What would it be like if he had consistent, appropriate support? If the sick and injured people in this country had the support they require? Wouldn’t that be a great little country to live in? Health before profit?

Isn’t it amazing when you see an old ‘thing’ that has completely lost its usefulness becoming really useful again but in a completely different way? Like – do you remember phone boxes? The ones you had to go to to make a call because you didn’t have a phone at home? Long before the age of the mobile phone? They have almost completely disappeared from out streets.

Last night, in this super-cool all open-plan collaborative Dogwatch place in super-cool CHQ in Ireland’s wonderful IFSC, I saw a couple of phone boxes being used again – only that they didn’t have any phones in them. They were a little like padded cells, given you the privacy you might be looking for when making a phone call.

I’m slowly finding back to myself and a bit of a routine following our stay in Germany first and then the epic cycle up the cost of California-a. It also means that I’m managing much better again to work with Pádraig on his exercises and the Tobii Dynavox. At the moment, we are using it once or twice a day, when, in reality, the device should be available to him all the time and he should be able to use it any time he wants to – not when I (or someone else) make it available to him. It’ll require a lot more additional work, but the day will come, I have no doubt whatsoever, that the Tobii Dynavox will be Pádraig’s voice.

Though, and of course, Pádraig is regaining his voice at the same time. Very, very slowly and not really controlled yet, but much more and better than before!

Finally, my (Spanish) friend who had told me about her friend’s daughter’s accident in Canada on the school exchange reminded me of something I had completely forgotten about. My friend had attended a lecture on the magic of books and how words reflect and describe our feelings; at one point the speaker noted that, quite remarkably, we have the words huérfano/a, viudo/a, but no specific word to refer to a parent who has lost a child – maybe because such a tragedy belongs to the unspeakable. Something that words cannot describe. Something that is never ‘supposed’ to happen. Life deals unspeakable tragedies and challenges us to get through this unspeakable pain. The amazing thing is that we can With our love and the love of others.