AJourney

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.

Remember

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!

Speaking

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.

Louise

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.

4.6 million

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?

Tempestuous

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…

Snow

Dublin is covered by a deep blanket of snow with temperatures well below zero, bringing the country to a stand-still. Winter has truly arrived.

To be honest – that’s not entirely true. Although the picture above is real and I just took it a few minutes ago when I brought out the bins. It is cold and there was some snow to cover the cars, but that’s it. I’m sure it’ll all be gone by tomorrow morning.

Before I brought out the bins tonight, I watched Ireland’s premier investigative news programme, Primetime, where the case of Catherine O’Leary was highlighted. She lives, according to her father, with a locked-in syndrome at home and has 10 staff, eight of them full-time, working with her. The staff has been paid out of a 2.5m euro settlement over the past four years. Apparently, the money will run out in about seven months. The father appealed to the HSE and the Department of Health to make sufficient funding available to him to keep his daughter at home. The problem is that his daughter has outlived the life-expectancy on which the settlement was based; and the settlement is final.

The programme highlighted the fact that Catherine’s case demonstrates a shortcoming in the way that settlements are made currently in Ireland: they are final and are often based on assumptions – when the assumptions are shown to be wrong, the settlement cannot be adjusted.

The programme, however, only touched briefly on another anomaly in the irish system and that is that the level of care Catherine receives at home could only have ever been  sustained because of the settlement that was made – by the looks of it, 500,000 euro were made available to her every year to care for her over five years, her assumed life-expectancy. Now that she has outlived that life expectancy, maybe because of the great care that very settlement made possible, there is going to be a big problem. No settlement money – no adequate home care.

This is a reality, and I think an incredible injustice, that Pádraig have had to live with since his accident in Cape Cod.

I’m feeling better and i’m back with Pádraig tonight. It is great and feels so good and familiar. I really missed his company. The last week, when I was ‘out’ sick, has taken so much out of ‘the other carer’ that she has spent most of the day resting, which is good and very necessary, but just shows. It is a bit frightening to see what happens when both of us aren’t that well. But we’ll get over it. Of course we will.

Even if tonight the most unlikely thing happened and Dublin really got snowed under:)

 

Contrast

We are surrounded by pictures and it takes something extraordinary to make us stop and take notice. This is one of these extraordinary pictures. Two hands reaching dipped into the water, reaching out to this extraordinarily beautiful whale.

A tourist on a boat in Laguna San Ignacio reaches into the water in the hope of petting one of many gray whales that frequent the bay to mate and care for their young. Once feared by fishermen, the unusually friendly animals are now a crucial part of the economy. (This photo was originally published in “Baja California’s Recipe for Saving Fishing Communities,” in September 2017. PHOTOGRAPH BY THOMAS P. PESCHAK, NATIONAL GEOGRAPHIC)

What makes this picture so exceptional in my view is the contrast between the two ‘creatures’ and the reaching out by each in their own way to the other.

I’m still not back working and living with Pádraig, though I’m getting there. I thought I’d be much better today, but then when I tried, I realised that I wasn’t. I know whatever I’m dealing with is something that can be dealt with, that time does make ‘go away’. That’s one thing time is good for.

Presence

We went to a funeral mass today for the husband of a friend who had died last week of motor neurone disease. The family lives just outside of Dublin in what used to be a small village and is now almost a suburb of the city. Even though, the church had not changed and still looked like a small country church; the people at the mass who packed the church beyond capacity also felt much more like a close nit country community than a cosmopolitan city crowd. The mass brought home the immense tragedy of his untimely death as well as the tremendous loss his departure meant to his wife and children, as well as to his wider family, friends and the community where he had lived.

The man had died at my age. He is had a wife and three children. So there were a few parallels and, for a moment, I thought about my own, and then ‘our’, limited presence on this earth.

New lives arrive and existing lives are taken away. All the time. Everybody knows, but few notice and only if and when they are directly affected. Everybody also knows that this whole process mostly just happens.

My presence on Earth, my arrival and my death, are accidental. (Unless, of course, I believe in a divine plan, some kind of ‘book’ that contains my name; a concept, I have problems with.) Therefore, the ‘big’ thing, the thing I can take charge of, the one I am responsible for, are neither my birth nor my death. It’s the time in between. However long that is.

Yes, there are plenty of reasons to mark the beginning and the end of one’s presence on Earth. But it’s only that presence that really counts: life.

Still not back to ‘normal’, still staying away from Pádraig so that I don’t pass on whatever it was that knocked me out. Hope to change that from tomorrow. I’m feeling better and while it’ll take another few days to recover fully, the ‘good’ molecules in my body are taking control back over from the ‘bad’ ones. (I know that’s not the way it works but that’s how it feels:)

Steam

I’m wading through legislation, policies, procedures and codes of practice. There’s too much material for any person to read.

And if one person managed that person would find no relation to reality in all these papers. It’s meant well. So next week, we’ll sign it. Seal it. And deliver it. Full steam ahead!

The last week has been incredibly different. I’m missing Pádraig and being with him. I’m experiencing another life, one I haven’t been in touch with. And I’m wondering: are these two different lives? Separate from each other? Or can they co-exist?