It’s sooo easy: when you are tired, sleep; when you are hungry, eat; when you are thirsty, drink. At least this is one of the most quoted wisdoms of a famous zen master.

So why do I start eating when I am tired? And before you ask: no, I don’t go to sleep when I am hungry. Is this just me? I don’t understand it!

It’s a perfect example of knowing what is the right thing to do but doing exactly the opposite.

The thing is that in the case of eating and sleeping it should really be easy, sooo easy. But it’s not, at least not for me. So what about the more complicated, not so easy, not so straight forward stuff? My common sense (the bit that is left) tells me every day that I should do one thing, but than I do another. Like I should be forgiving, generous, empathetic, listening, understanding, helpful, supportive – and I should be: outraged by injustice, corruption and inequality, and be outspoken, uncensored, un-integrated, not pressed into a bad consensus. And then life takes over and I develop blind spots. Isn’t it funny?

Tuesday is, whenever possible, swimming day. An afternoon for Pádraig to relax in the water. To do things, every week, he had not done before, “firsts”. Today’s first was that he held on to the side bar at the deep end of the pool and stood up as tall as he is. Ok, amazing but not really anything completely new… but: he did it almost completely by himself. Without any support from me. Except for helping Pádraig to keep his head balanced. He stood up in the water, holding on to the side bar, with me just supporting his head a little, but nothing more. Isn’t that so unbelievably brilliant?

Going to the pool is the right thing. Allowing us into the pool and helping Pádraig and in any way they can, is the right thing. Knowing that ‘knowing the right thing’ does not mean necessarily ‘doing the right thing’ makes the people helping Pádraig to get into the water my personal heroes. Because they not only know, they actually do the right thing.

Have you ever missed the boat? Or found that the train had left (without you)? We had a great laugh to today when we discovered that Irish people are more likely to have missed the boat, whereas the Germans would have had problems with the train (“Der Zug is abgefahren!”).

Apart from the ‘real thing’, these are, of course, also expressions indicating that a chance or an opportunity had passed and now is no longer available. And as Ireland is an island, ‘missing the boat’ was the thing you wanted to avoid, whereas the Germans were (and are) more into chasing their trains.

We also had great fun today when Pádraig started to do his physio again on the floor mat, for the first time since Christmas. He really enjoyed it! Feeling his body, starting to recover control over his body, using all sorts of muscles he’d never use in the bed or when standing or when in his wheelchair. It must be an unbelievable journey of recovery for him.

Conscious that me body is not getting younger, I re-joined a yoga class I had been to before Christmas. The comment of a young person who joined me (and who went to the class for the first time) was: “I’m turning more often in my bed during the night than I did during the 1 1/2 of this class”. Veeerrry funny! I think they were having me on….!

The fun conversation about the boats and the trains made me think. It’s better to catch them, whether it’s the boat or the train. Because some opportunities don’t arise twice. And when they’re gone, they’re gone.

Realty has overtaken science fiction. Governments serve multinationals that define themselves no longer as enterprises but as movements. Taxes are paid by the workers but not by those who make the profits. News are controlled by consensus. People and their lives become products, they are profiled using massive amounts of data about them. Ever more sophisticated algorithms are being used to predict our next moves, our next desires, our next purchase, our opinions and preferences. Political decisions are based on opinion polls, not on convictions or beliefs of what is right or wrong.

Does that sound like a conspiracy theory? Or is it reality?

I have been wondering for a long time, how people can allow ‘things’ to continue although they are so obviously wrong. Wrong to an extend that they violate the basic human rights of some of our fellow citizens. Knowing that someone is conscious but not offering constructive help and support? Instead offering what amounts to palliative treatment. The only reason I can come up with is fear. Fear of dissent. Fear of exposure. Fear of causing trouble. Fear of becoming the target of the might of the government and its agencies.

It was that kind of fear that allowed ruthless people to take over countries and to impose dictatorships – even in countries like Germany, known world-wide for its cultural achievements.

Never again can we allow fear to rule.

Pádraig today spent an afternoon eating cake, crackers and cheese, and sandwiches in the company of some of the most unorthodox and fearless people I’ve got to know in Ireland. It was an amazing afternoon, because of the company, but also because of the normality of him eating and drinking what we all ate and drunk. Something that would have been impossible not too long ago. Something that just ‘happened’ because we, his friends and himself, went for it. Leaving fear behind.

Everybody knows is one of my favourite songs. The thing is that while everybody knows I wouldn’t have expected everybody to agree. Consensus while it sounds great really is the end of a healthy dissent, of people holding different opinions, of people opening up the debate with their weird and wonderful opinions.

There was a point in a discussion where I wondered why on earth people could not see the world as I did, why people could not just be like myself. Life would be so easy, so good and without trouble.

What an idiotic thought that was. Because in order to question what I do, I need people to be of a different opinion. And I need to be questions to reflect on what I am doing to do what I do better. Life would not only be terribly boring if we all agreed, it would also quickly deteriorate and quickly become insufferable.

Pádraig went out today to celebrate his grandaunts birthday. Tomorrow he’ll be at a small party to celebrate life with a person nearing the end of her life. We meant to go to the tradfest taking place in Dublin these days but haven’t managed to go. We need to go out more. Be with other people. Which is what life is all about.

And we need to break the consensus. We need to question what is going on around us. All the time. And if our commons sense tells us that something doesn’t make sense, then it doesn’t. And we shouldn’t agree with it.

There are those moments in relationships you’ll never forget in your life. One of those I won’t forget was when I sent I tape to Ireland with songs I really really liked – but, as it turned out, didn’t really fully understand. Those were the days when you couldn’t just whatsup or skype to double-check. Those were the days when we had to wait for Mary to get a quiet moment in the exchange to put a free call through to Germany.

I never watched the video of “Hard to say I’m sorry” by Chicago (it would have destroyed the song for me) and didn’t understand the lyrics but just thought it was a very beautiful song. Until the girl I had sent it to years later told me that when she received the tape with the song, together with my love letter, she couldn’t stop wondering whether there was an unspoken message in this. Like

Everybody needs a little time away,” I heard her say, “from each other.”
“Even lover’s need a holiday far away from each other.”
Hold me now. It’s hard for me to say I’m sorry.

When she said it, when she recited and explained the lyrics to me, I realised that I had just very narrowly avoided absolute disaster, taping and sending this beautiful song, this message of love (I thought), in utter ignorance of its meaning.

Apart from becoming part of my own personal folklore, this ‘story’ told me that whatever you intend to say, might not be what you’re saying, and might be far from what is being understood at the receiving end – which might lead to a reaction that could just be the opposite to what you had expected. Taking stuff like that, absolute innocent wrong-message-packing and misinterpretations, into account can avoid fatal outcomes.

This is what makes a therapist an excellent therapist. Coming up with new stuff, new exercises, new ways to have fun while recovering function. It’s not just knowing how muscles and joints and nerves are connected. It’s also, and equally important, about being creative, connected, understanding, about creating these moments when Pádraig feels that he can do new stuff, that his incredible efforts are paying off. Today he had one of those.

Not just one but at least two – because in the afternoon, during his speech and language therapy, he also managed to use the switch, his bleeper with his *hand* for answering questions, for doing a quiz, and for maths challenges. The therapist had the brain wave to invite his friends to a session with her to see how they could make use of that bleeper to get Pádraig involved.

A good day, though still with echoes of terrible sadness and loss. But a good day.

(Thankfully, the recipient of my tape with this song by Chicago realised my innocence, or rather ignorance, and decided that Germans are incapable of sending ‘encoded’ messages and took the song for what it had been for me: just a nice song with lyrics I didn’t understand:)

It all became quite real today, very final. More than 500 people gathered this morning in Palmerston Church to remember her and say their last good-byes. Many accompanied her to the cemetery in Bailieborough, Co. Cavan, her last resting place, up on a windswept hill. She had asked for everybody there to be invited to the Hotel Bailie. So many people followed that invitation that at first there weren’t enough tables and seats for everybody.

So many people in grief. So many people with tears rolling down their cheeks. So many people feeling an incredible loss. So many people being reminded of their own mortality, perhaps reminded of another loss they suffered some time ago.

I can’t get to grips with this grief. Can’t get to grips with that terrible sadness that comes with grief. I cried my eyes out this morning. The biggest question in my head was how much more is there to come? I, for one, have had enough.

In any case, it’s clear what there is to do and it’s clear what Louise would have liked us to do.

It was Pádraig’s longest day, with no breaks except for the drive to Cavan and back. He won’t forget today’s journey. Neither, I suspect, will any of us.

We are the Borg. Lower your shields and surrender your ships. We will add your biological and technological distinctiveness to our own. Your culture will adapt to service us. Resistance is futile. Your life as it has been is over.

In Star Trek, this is part of the standard message used by the Borg when they encounter an alien race they intend to assimilate into their collective.

I have never met the Borg but that message sounds familiar. As if I’d heard it several times most days of my life. Especially recently. There is this force that just doesn’t want me to be who I am, or do what I want or need to do. It wants me to surrender and to be assimilated. It tells me that ‘resistance is futile’, just give in, why bother, why rebel, if you’re going to loose anyhow in the end? (I wonder, would the Borg be similar to what sociologists and educators call socialisation?)

Just by accident, I came across an Irish Times article by Laura Kennedy today, in which she defines ‘resistance‘ from a completely different perspective, as a force that is blocking our creativeness, “a force which flourishes counter to our will. Resistance is that force which blocks our progress, or our beginning. It is not something we can blame or use to excuse inaction, for we ourselves generate and feed resistance. We can either nurture our work, or nurture our resistance. Most of us choose the latter without even realising.” Nothing changes.

BUT – we can overcome that block, that resistance, we can choose not to be assimilated, to be who we are, do what we do, say what needs to be said, and live how we want to live. We can choose to tell the Borg to just get lost in one of these black holes in the universe from where there is no return.

In my mind, Louise was one of these persons who was not to be assimilated, not by the Borg nor by anybody else. Sure, it didn’t make her life easier. There was a lot of resistance she had to deal with, not all of which could be overcome. She was who she was and was tremendously proud of it. And rightly so.

We went back to some of the exercises Pádraig had tried some time ago and then had been kind of forgotten, maybe he was just busy doing other stuff. The ‘blow the candle’ exercise was one, and he rendered it useless almost immediately – because he mastered it so well, by blowing out the candle a few times in a row.

Now this might sound trivial and easy but it’s not. And more so, controlling his breath is something Pádraig has been struggling with a bit, being able to do it is one of the pre-requisites of using his voice.

So we quickly moved on to the next exercise we could remember from way back then, when he tried hard but did not manage. To use a straw to drink. As the blowing-out-the-candle bit had worked so well, we asked him to blow into the straw and blow some bubbles into the water glass at the end of the straw.

Which is when he decided that he could do better, that he could do another FIRST, not blowing into the straw but using it to suck in the air, then the water, and drink the water using the straw.

It was incredible. And showed again, how much we at times underestimate Pádraig (though we should know better by now:) and how much he is capable to do, if we just allow him to do it, provide him with the ‘tools’, encourage him, and believe in his capabilities.

He is overcoming that outer and inner resistance, the physical resistance and the inner, mental resistance each and every day, being himself, doing what he wants to do, practising, training, trying, working incredibly hard, never accepting ‘no, not possible’ but believing that he can do whatever he wants to do by putting his body and soul behind that effort.

You know that your body supposedly produces endorphins, this morphin-like substance, that makes you feel really great during and after strenuous exercise. I’ve started ‘running’ again and this morning, while making my way to the sea front, I suddenly realised the reason why this is so. My brain just protects my body from this terrible pain caused by trying to become fit and healthy. It’s so funny! I’m doing so much damage to my body that I produce a kind of drug to protect me from the pain! Incredible!

After a long break, Pádraig went to the pool again this afternoon. He really really enjoyed that and when we tried our series of exercises  he did something that he hadn’t ever done before. He put one foot in front of the other and, taking small steps, he walked from one side of the pool to the other, moving his feet and legs all by himself, straightening them as he went along, standing up the whole time, with me just supporting him from behind. It was a first I couldn’t get over and one that made me so happy and proud. Pádraig was pretty impressed himself and tremendously happy that he had been able to do this.

We’ll keep trying this and one day, he’ll do it outside of the water! Step by step.

And while he keeps trying, I will keep trying to get ready for the next marathon. Producing humungous amounts of endorphins and other substances to protect me from the pain I’m subjecting my body to:)

Our focus is on the end, I heard someone saying recently. But, said that person, while the end is important, it is the one event we can’t neither avoid nor predict.

So would it be wiser to spend more time focusing on the here and now, on our every-day journey through life. What we make of it.

I have been thinking for the past days about the meaning of Louise’s untimely departure, that is if there is a meaning.

I consider myself incredible fortunate to have been a friend of Louise’s. I think I can speak for many, many other people whose lives were touched by Louise, that she was one of the most generous, helpful, and caring people you could ever come across. Her kindness and at times slightly wacky (if that is the word:) type of humour will stay with me forever.

As does her legacy: the recognition of the importance of living a good life, of being there for others.

Tonight was the first Monday night in a long, long time that it was us who were sitting around Pádraig’s bed instead of Louise reading to him from one of the Irish books she had searched for, found, and brought along for Pádraig. She was there with us. And she will always be.

It’s one of these nights when I’ll have to keep it short, short before my head’ll hit the keyboard. The day was quiet, in a good mood, slow but diverse. I’ll try to get running again tomorrow morning. We’ll try to stand Pádraig up again. We’ll get back to our ‘normal’ pre-cold routine tomorrow as best as we can.

Good night for now!