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!

It was a miserable day in Dublin today. Grey. Wet. Cold. It reflected our mood, how we felt today after yesterday’s incredible loss. Pádraig was terribly sad when he heard about what happened, as we all were.

Last Monday, I had a discussion with Louise about something I had seen on TV. Young men with a vocation had told the presenter that they had heard God speaking to them. Literally. I had said to Louise that I did understand the idea of a vocation, I could even follow this idea that there is a calling, that someone could be very strongly drawn to religious (or another dedicated) life – but that I had a problem to believe that someone could literally hear voices, normally.

Today, and by accident, I picked up a book someone had left here and found the following quote by someone called Robert Wicks:

When we pray, how often do we say: “Speak, Lord. for your servant is listening”? More often, I think, we say:”Listen, Lord, for your servant is speaking!”

It’s one of the best, thought-provoking quotes I’ve read in a long time. Because it reflects an attitude to life that I recognise. Instead of listening, instead of being open to those around us, instead of inviting people and the world around us, the moments we’re living, in without prejudice – instead of listening, I’m talking, I’m demanding, I’m busy doing stuff non-stop. And very often getting annoyed, impatient, frustrated when things don’t go my way. I’m not someone who would have a conversation with God, but if I think of God as the giver of life, of life itself, of the others, the persons I meet, who are around me, well then I think that listening more to them, and talking less at them would make the world a better place and people a happier people.

This evening we received the very sad news that our and, especially, Pádraig’s very good friend, Pat’s colleague Louise had died suddenly and unexpected.

Louise had been visiting Pádraig every Monday evening forever to read and chat to him as Gaeilge. She had always made a big effort to find something really interesting, like the book she had given as a Christmas present about a German woman reflecting in Irish about her life in Ireland. It is utterly and completely unreal that she isn’t with us anymore, that she won’t be coming anymore on those Monday evenings, that she won’t be reading all those wonderful stories to Pádraig anymore, that she won’t be traveling with us anymore..

She had been coming to Lourdes with Pádraig and us, last year even on the train from Germany. She had already planned this year’s journey with us.

There are no words to describe the loss and the sadness of her untimely death. We are all in shock. My heart and thoughts and prayers are with Louise’s family tonight. May she rest in peace.

Apple laptops and computers and software are probably amongst the best you can get. Well, there is this nagging doubt in my mind about all the data they are collecting about people, and the way they manufacture their hardware in Asia, and one day, I have promised myself, I will deal with that.

Remember when the European Commission estimated that Apple owed the Irish people 15 billion euro and the Irish Government, representing the Irish people, said they didn’t really want it? So they have been making a legal case that would allow them not to have to accept that tax from Apple. Today, the Irish Times reports that legal bills, tax advice, and translation costs have now risen above 4.6 million euro. (Just in case you wonder about the translation – that was only 50k:) Imagine, we the Irish tax payers have so far paid 4.6 million euro, mostly to legal and accountancy firms, so that our representatives, the Irish Government, can avoid accepting 15 billion euro in tax from Apple due to it, according to the European Commission – that has now taken the Irish Government to the European Court of Justice to make them accept that tax.

I know, life, politics, tax and all that stuff are complicated. But I wonder whether I am really missing something here or whether this is really as ridiculous as it seems. And if it s, why we, the people, allow this to happen? Especially when we are talking day in and day out about the crisis in housing, in healthcare, or with institutions of the State which no-one will ever investigate because it would be too expensive. – Stuff that makes me want to go up onto a mountain in a far away country, never to hear ever again about any of it.

In the meantime, I am finalising the paperwork with the HSE. Which is good news and something very few people, if any, would have believed to be possible a little more than a year ago.

I’m spending more time with Pádraig again, but am still spending a few hours in bed during the day trying to get rid of the remainder of this cold, or was it the flu?

The winter is slightly depressing, not just because of the cold, but also because it is so difficult to go out, to get a bit of sunlight, or some fresh air. From next week on, I’ll pick an afternoon and I will go out with Pádraig – on good days for a walk, on wet, windy or dark days to see a movie, visit a museum or walk a shopping centre. We need to see other people!

Oh – talking about that mountain. Got a Whatsup call from Pádraig’s friend who is in Nepal. Unfortunately, Pádraig had his afternoon nap when he called. Our conversation went slightly over the top, literally, when we considered, for a second, to get Pádraig to the Everest Base Camp in a helicopter. But Nepal – wouldn’t that be an adventure and something for the brain and the senses?

Sitting at the kitchen table and listening to the wind outside, it sounds as if the storm forecast for yesterday just arrived. It’s wild out there.

In contrast to the meeting with the HSE I had today. The idea was to sign the service agreement and to kick off the An Saol Project – which didn’t happen. But only just about. A few really small things need to happen and we’ll be off, I’d say in just a few more weeks. Time that would have driven me crazy a few months ago. But now seems like nothing. What are a few more weeks if we can change how persons with very severe acquired brain injury are treated in this country, if we have a chance to change the hearts and minds of people about how they perceive sABI and sABI survivors?

I’m still somewhat exhausted by that cold and maybe that is the reason I don’t feel as ‘tempestuous’ as the wind that is sweeping through our back garden tonight. Maybe it’s the realisation that while raw anger is good at times, it needs to be supplemented with long-term determination. And while the former often feels very liberating, it’s the latter that brings sustainable change – but is also much harder.

It’s the sprint versus marathon analogy.

Being back with Pádraig at least for stretches of the day is really good. He had a speech and language therapy session in the morning and a music therapy session in the afternoon, with Dolly, moonlighting as a therapy dog at times. We were trying to teach her Irish, but when we wanted to teach her ‘slain’ we were told she only understands ‘Hello’.

Anyways, early bed time tonight – when it sounds like the only place to be is under a really warm, thick blanket. We’ll continue the marathon tomorrow…