Dis-engagement

It’s getting too late and I’m getting too tired to write. But just a note about two things that happened today. Both have to do with people. There were people who were really really inspiring and supportive, visitors, helpers, therapists. But there was also a person who made me doubt (for a few minutes) in humanity. It’s surprising what effect people can have on you who all of a sudden turn from being friendly to being hostile.

Dis-engagement is my reaction – everything else would be a waste of energy.

Absurdity

There is one cult figure who didn’t die aged 27. He was 46 when he died in a car crash in 1960. It’s the author and philosopher Albert Camus, the man who wrote that “There is only one really serious philosophical question, and that is suicide” given that “This world in itself is not reasonable, that is all that can be said”, It a world reflecting The Myth of Sisyphus, where, “Should I kill myself?” in the face of the absurdity of life is the essential philosophical question. The main concern of his book, The Myth of Sisyphus, is to sketch ways of living our lives so as to make them worth living despite their being meaningless.

Heavy stuff it is.

Why keep trying, why keep struggling, why continue suffering, why pushing that stone up the hill when it will keep rolling down each time you thing you’ve just made it?

Not just heavy, but difficult to answer too.

For me, there is a will to live; there is an obligation to live; and there are the moments to live for. And all that has become so much clearer over the past few years, and even over the past weekend. In an inexplicably weird way the meaning of life reveals itself in all its clarity when life is most challenging and absurd.

Pádraig amazed all who saw him this week. Today, he revealed that his favourite German group was Rosenstolz and introduced one of his therapists to Rammstein – both really well known German groups, though for very different tastes:)

Legwork

Had I not been there, I would have found it hard to believe what happened this morning at what was one of the most energetic, positive, fun-filled, and ambitious therapy sessions so far. We were four, in addition to Pádraig, and at the end of that hour, or hour and a half, we all felt we had done not just a bit of really hard work, but that we had achieved something really significant.

The videos show how Pádraig is able to push his legs (note the plural!) up against a ‘weight’, in addition to gravity, when he is lying on his stomach. This would have been almost unthinkable a year ago. And the videos provide just a glimpse at what happened this morning. We, and especially Pádraig, had every reason to feel such a sense of achievement. It was a very special, really happy morning!

Ophelia

The best ever concert in rock history, without any shadow of a doubt, must have been The Last Waltz by The Band on 25 November 1976. Thankfully, it was recorded live and has become one of the absolute classics. That’s where I came across Ophelia first. In his song, Robbie Robertson was asking –

Boards on the window
Mail by the door
What would anybody leave so quickly for?
Ophelia
Where have you gone?

Ireland closed down today because of the ex-hurricane Ophelia. Schools will still be closed tomorrow. It was as if time had stood still. As if nothing else was happening in the world but this storm. It reaped havoc, hundreds of people are out of electricity, people even died – as predicted by the media yesterday. Today watching the TV, listening to the news was like watching reality TV. It was happening as we were watching it. Dublin’s streets were deserted, shops were closed, people stayed in their houses hardly anybody went to work, following the advice by the government not to go out.

This storm was an event.

On other days, the news are equally desperate, full of disaster: murders, bombs, threatened annihilation of the world by maverick politicians, police corruption, health system failures, housing crisis, and the likes. But Ophelia was special. One big bad thing and nothing else. For an entire day. Today, Kim Yong-un could have launched the entire missile reservoir and we wouldn’t have heard anything about it. Today was about Ophelia and nothing else.

But soon it will all be forgotten and the attention will  shift to the next disaster. Ophelia, where have you gone?

Life can’t be about Ophelias. About headline disasters. It has to be about the every day struggle that so many of us go through, it has to be the courage of so many people making the best of their lives even when they feel they can’t take much more, it has to be about the generosity of heart of people who reach out and offer a helping hand, every day.

I’m saying this, because I am getting through a tough time as so many others are. And I’m saying this because I would never be able to survive these times without that helping hand.

Pádraig was delighted to meet his new carers (from Germany) today; to experience the storm of the century; to use his standing frame; to experience new food and new textures; to live. Pat is also getting better, though she is still very sore.

Tomorrow, we’ll ask ourselves: Ophelia, where have you gone? While continuing with our boring, every day struggle, feeling the pain, having fun, feeling despair, laughing about the twist and turns of our lives, being happy and fortunate to be in the company of Dreamboaters.

Windy

The weekend was challenging, mentally and physically, with as good as no help available via all those hours allocated to Pádraig through his home care package. Although we had been told that Pat was entitled to some help that did not materialise either.

On the positive side, Pádraig’s new carer arrived from Germany this evening and will start tomorrow.

Just heard that the country will come more or less to a stand still tomorrow because of storm Ophelia. First time ever such a serious storm is going to hit Ireland.

Titanic

Not sure whether it is the ‘Saturday Night Fever‘. Whatever it is, it keeps me awake. I can’t sleep. When what is going on stops, it takes me time to slow down and rest.

Pat keeps getting better. So is Pádraig. Each at their own pace. The days have never been as full.

I was reading a story to Pádraig tonight that ended with one of my favourite sayings: the ark was built by amateurs, the Titanic by professionals. Meaning that those who succeed are often those who don’t know what they’re up against but know what they have to do.

Isn’t that comforting?

Lift

It has been one of these days packed with stuff and not enough time to do half of the things that should have been done. Well, there’s always tomorrow:) It’s good to stay busy.

There have been so many friends helping out over the past days, so many more offering help that it I don’t know how to thank them. Not only would it have been impossible to manage without that help, knowing that it was available, that people have been making time to get us through these difficult days, just knowing that it was there gave me confidence and strength.

It has been an amazing (you don’t like that word either, do you?) experience, really uplifting, just when I needed a bit of a lift!

BreadSoda

I feel I should be panicking, worrying, freaking out, being mad, going crazy, having a nervous breakdown, doubting in the meaning of life, wondering why us. The Sheriff in Brewster told me he knew a father in my situation who had become an alcoholic. The doctor in charge of disability in Hamburg told me that most couples looking after their child at home would get a divorce.

The truth is that I have never felt as calm and confident and strong and purposeful in my life.

It’s the dreamboater thing: knowing that you can achieve the impossible; being supported by incredible friends who will never let you go; defying misleading but well established truths; believing in justice; being convinced that you can be the change.

Pádraig is getting better. He is surrounded by friends, old and new. There is a buzz here in the house that I wouldn’t believe could exist if I did not experience it every day. It’s challenging for him, exciting, funny, and loving. It’s the energy he shares and which keeps him not just going but growing. Pat is getting better too and will hopefully be out of hospital by the end of the week.

Someone told me today that Dublin mothers, sisters, and grandmothers add a pinch of bread soda to the water in which they cook cabbage. I asked her why, what does the bread soda do to the taste or texture of the cabbage? She looked at me and said: that’s what women in Dublin do when they cook cabbage. That’s just the way it is. They’ve always done it that way.

There is this idea that some ‘truths’ are established so firmly that you’d never question them.

I was thinking: I’ll take the bread soda out of the cabbage and start questioning those well-established ways of doing things. Beginning with the obvious.