4Now

Can you imagine a newsreader saying: “There are no news tonight. And now the weather.”? Not really. And yet, my best friend’s father remembered a day where exactly this happened.

Was the newsreader right? Was there, indeed, a day when nothing happened? vI feel that there are days when what moves me is so important that anything else disappears into the background. Our really good friends from Spain arrived today to visit for a few days – an absolute highlight! Pádraig had an excellent hour of music therapy.This morning, we did exercises we hadn’t done in a good while. Yet the one outstanding hour was in the presence of a good friend who had died. Another person, the third since before Christmas, who was very close to us and passed away.

I’ll leave you for now and wish us a restful and peaceful night!

Proud

Tuesday is swimming day. One of our favourite days of the week. We can’t take any pictures, picture-taking is not allowed in most Irish pools when other people are around. But if we could, you’d see Pádraig kicking his legs moving through the pool on his back; holding on to the side bar and pushing himself out before pulling him back in; walking across the pool moving his weight from one side to the other and stretching both of his legs as he’s doing so. Today was the first time he did all of this with more confidence, determination and verve.

Earlier on today, one of us asked Pádraig which word he would use to describe them. He used his new letter sections and his bleeper to give us an “s”. Followed by an “m”. There were some laughters and a smile on Pádraig’s face (or was it a smirk?).

“Now, Pádraig, this could be “smart”, or “small”, or, who knows, “smelly” – or could you think of another descriptor?

“Give us the next letter, Pádraig!” And he gave us an “a” which reduced the options to just two: smart or small. “Which one is it, Pádraig?” And guess what? – He went for “small” causing laughter all around!!!

I think I cannot even get close to imagining how empowering that moment must have been for Pádraig, making a whole group of people around him, family, friends, carers, make laugh! Using his very limited means of communication and his incredible, loving sense of humour! He must have felt so proud!

Movement

There should be a job coming up at Ireland’s Herald newspaper any day now. I mean, do they check the layout before they send it to press? Here is page 9 of today’s edition. You couldn’t make it up.

I spent the morning with a 5-person film crew, two cameras and a drone in Creation House / FABrík for the first day of filming the An Saol documentary. What an exciting morning! It was brilliant to see the enthusiasm of the crew about the project and the premises. It really re-enforced, if that was necessary, the decision to go with what is a magnificent building – even if it requires some refurbishment…

Unfortunately, the lift did not work this morning (but the owners will get that fixed) which meant that on this occasion Pádraig could not come along. I’ve told him so often about the place and, to date, he hasn’t seen it. Although, with a bit of luck, the lift will be fixed this week and we’ll be able to have a ‘walk-around’.

Pádraig did come with us to our friend’s Louise one month’s mind. The DCU inter-face centre, where the mass was held, was too small to hold the hundreds of people attending celebrating Louise’s life and giving thanks for the gift of her friendship. It’s hard to believe that it is already a month since her death.

With a bit of luck we will be getting a cut of today’s filming at the FABrík very soon. Can’t wait to see it, can’t wait to share it.

Finally, have a look at this.

Seventy-one dead.” “And still no arrests?” “How come?”

Three billboards outside Grenfell Towers in London — where a massive fire ripped through a 24-story block of public housing flats on June 14, killing 71 people — demand justice. It this the start of a movement? Three billboards…?

MeaningAndPurpose

Pablo Picasso once said: The meaning of life is to find your gift. The purpose of life is to give it away.

I’m following this programme that is supposed to help me prepare for the Hamburg Marathon. Today, that programme told me to run 16km. Before you ask: yes, I did make it back home. But just about. And it wasn’t so bad that I asked myself why on earth I was doing this. While I was ‘running’ I had to come up with something to look forward to. Like a shower and a rest. It worked.

I’m doing this running thing to keep fit, to get out, and to clear up my mind. When I’m struggling for air and my legs switch to automatic my mind goes blank. It’s a break from the questions that bother me. From the quest for meaning and purpose.

Pádraig went out this afternoon to visit his grandaunts. The idea of him going to see them in the nursing home, in his wheelchair, is strange. But they are delighted each time he comes to see them. They wonder how he is doing, how he is improving. And I think he likes the idea of the visits that really makes their day, bringing happiness to them. – Think about it: isn’t that another first? Something nobody had ever expected to happen? That Pádraig would go to visit his 90 year-old grandaunts, bringing them happiness and making their day? That his fight is not just for survival but a meaning and purpose, and not just for him but for so many others? Finding his gift and giving it away?

Question

We’d like to finish off with a new single. It’s going to be out in two weeks time on Threshold Records and it’s a song written by Justin called Question, says  Ray Thomas of the Moody Blues. Check out the incredible moustache and the most incredible music. The year was 1970!

Why do we never get an answer
When we’re knocking at the door
With a thousand million questions
About hate and death and war?

When we stop and look around us
There is nothing that we need.
In a world of persecution that is burning in its greed.

I thought more about the “Three Billboards…”. Yes. – At the core, it’s not just about outrage about something not happening. It’s about outrage at this CONSENSUS that things should just be left as they are. Don’t rock the boat. Don’t annoy anyone. Be on the side of the ‘majority’, of ‘society’, of the ‘establishment’. Sure, what difference will your ‘rebellion’ make anyways? It’ll just cause problems for you and won’t resolve anything.

The point is that it doesn’t really matter whether the ‘rebellion’, the billboards, will make a difference.

What matters is that we keep “knocking at the door with a thousand million questions about hate and death and war” and that we do rebel — and that we include people no matter how their abilities might be limited; that we provide people with the help they need no matter how helpless they seem to be; that we don’t leave anybody lying in bed for the rest of their lives staring at the ceiling just because someone has decided that they don’t offer a ‘return on investment’.

In the well-meant but very non-PC words of Mildred Hayes, the lead actress in “Three Billboards…”: This didn’t put an end to shit, you fucking retard; this is just the fucking start. Why don’t you put that on your Good Morning Missouri fucking wake up broadcast, bitch?

Pádraig went out for a nearly 2 hour walk to the Botanic Gardens with two people nearly his age, enjoying the ‘warm’ weather. 10o Celsius! Unbelievable. It makes a huge difference to be able again to go out without fear of catching a cold! And being in the company of people of your age who share your interests, your sense of humour, and your taste of stuff, I am sure.

4Kilos

The central theme of “Three Billboards…” is outrage and what to do with it. Today, I heard an ad on the radio by the Mother and Baby Homes Commission of Investigation set up by the Irish Government asking people to come forward and report to it what they know about those home that operated, apparently, up to 1998.

Could you imagine, for a moment, what would happen if someone found the corpse of a baby buried in my back garden?

Well, in Tuam, Co. Galway, the Bon Secours Mother and Baby Home was a maternity home for unmarried mothers and their babies. Here are some details:

In 2012, the Health Service Executive raised concerns that up to 1,000 children had been sent from the Home for illegal adoptions in the United States, without their mothers’ consent. In 2014, a local amateur historian, Catherine Corless, published an article documenting the deaths of 796 babies and toddlers at the Home during its decades of operation. Excavations carried out between November 2016 and February 2017 that had been ordered by the Commission of Investigation found a “significant” quantity of human remains, aged from 35 foetal weeks to two to three years, interred in “a vault with twenty chambers”. A later report by an Expert Technical Group, commissioned by the Department of Children and Youth Affairs, confirmed that the vault was a sewage tank.

And the government agency investigating this – *not* the police – is looking for witnesses in a radio ad.

We need billboards, many more than just three, asking why the police is not investigating these horrific crimes, bringing to justice those who know about these crimes but conceal the truth.

Pádraig had a good, quiet day today. Some exercises. A short walk around the block. Some good food, smoothies, and other drinks. No medication. No PRG-food or liquids. No food supplements. I have to remind myself from time to time how amazing this is. Two days ago the community dietitian paid her 6-monthly visit to him. One of the things she does is to weigh him. Always a tense moment for everyone.

Because there was this fear that, apart from threatening aspiration, pneumonia and death highlighted by some therapists in the past, that he might be loosing weight not receiving any PEG food or food supplements. On this occasion it turned out that Pádraig had gained 4 kilos. No-one could believe it. 4 kilos! Incredible!

Ebbing

What are the three billboard outside Ebbing, Missouri, all about? For the first time in a long time, Pádraig went to the cinema this afternoon, organised by one of his friend. Pádraig really likes Martin McDonagh, the author and director of the movie we went to see. He has watched in Brugge so often that he knows the dialogue off by heart.

Three Billboards has a similar kind of humour a sense of tragedy, mixed with some pretty violent scenes, as In Brugge. Coming out of the movie, I was wondering what it is all about. Tonight, I think it is all about the all consuming rage a person can feel in the face of incredible injustice. It is about doing something, better: *anything*, to disrupt the deafening consensus in our society. It is about a demonstration of how an all-consuming desire for revenge can isolate those who seek it from everybody around them.

There were times when I thought, I will be paying the rent for billboards to ask the questions about young people kept in nursing homes as if they were already dead, with not a chance in a million given to recover. To the contrary. I have felt this outrage myself.

The message of the movie, well: one message of the movie, is that this outrage just leads to more injustice and violence.

My lesson from the movie: rather than attacking something ‘bad’ (which can feel quite liberating) support ‘good’ alternatives and demonstrate how than can work.

If we make An Saol a success there will be no going back – and no need to attack the existing alternatives. Because they will just disappear.

Lemon

Pádraig has started to work with a new system of spelling. It’s still a start-up, in a way, and none of us has got all the details right, but I think we’re on to something here. His therapist talked to people using this system for some time now and they have managed, apparently, to spell more than thirty words in a minute.

The letters of the alphabet are organised in four quadrants. To pick a letter we ask “Is the letter in quadrant 1 – 2 – 3 – 4? Pádraig bleeps when the right quadrant comes up. Then we read out the letters and he bleeps when the letter comes up. It’s two bleeps to find a letter. We all will have to learn about how the letters a grouped but once we’ll have mastered that, it could be a lightning fast system to spell words.

When we tried it out today, we got the first letter wrong. We had asked Pádraig what he liked most on pancakes. We started again and to the word right. It’s lemon he likes most on pancakes.

We then asked him to spell just any word that he wanted to spell. Any.

Guess what he spelled? With a humongous smile on his face? – Exactly! L-e-m-o-n.

Finally, there is something in this photo that makes it special. Dolly came in today with a lovely flower on her collar, celebrating Valentine’s Day. I tried to get a picture of the flower, unfortunately it didn’t come up.

But it’s still a very special picture, I think. (Even if you’re not big into dogs:)

BirthdayCandle

Just got these pictures from my post-birthday celebrations. Pádraig blew out the candle! (And: just in case you were wondering… the cards in the background are neither his nor, sadly, mine:)

What a day Pádraig had: nearly an hour in his standing frame, physio with brilliant movements on the floor mat, and the Tuesday swim and walk-across-the-pool. It makes me feel exhausted just writing about it. He had a brilliant day and he enjoyed the different kinds of activities and exercises tremendously. Including a long chat before bedtime with loads of smiles and jokes. (Before you ask: it wasn’t me who was telling the jokes.)

It’s great to travel. And it’s great to be back home. It’s great to exhaust yourself. And it’s great to rest. – There is a season and a time for everything under heaven!

Nachfeier

It was really hard to get up this morning. I haven’t figured out what it was, but whatever it was, the beds and blankets and linen were just perfect. Leaving all this behind was a major act of mind over matter. And then – we had to get out of the hotel, passing Udo’s mega painting, walk to the train station, through the snow, get on the S1, the check-in, onto the plane. This is when plans started not to work out. A very heavy snow shower covered Hamburg Airport. Luckily, they managed to clear at least one runway. Once the plane was de-iced, we could finally take of.

We were several hours late getting to Dublin. I went home to get Pádraig’s car.

Not sure whether you know this feeling when you click the key, they lights of the car should go on and it should unlock the doors. I clicked and clicked and clicked and nothing happened. Turned out I had forgotten to turn off the light of the belt unlocking system for the wheelchair and I had drained the battery. Got that sorted eventually and managed to get the rest of the family home.

Just half an hour later, Pádraig had a physio session. He did so well that we all were really amazed by his moves. Look at that foot-work. Yes, he has been able for some time to lift up his legs, and down, and up – one the legs were already off the ground. But today, he lifted up foot and leg right from the floor and up into the air. Is that a first? I think it id.

Tonight, having finally had my birthday cake and a special dinner (“Nachfeier”) my eyes keep closing while I’m trying to write this.

Once I keep going, all is good. Once I stop, I nearly collapse. It’s when it’s over that the exhaustion kicks in. I’ll stop right here and now and have an early night