Stir fry. Nothing special about it. Noodles. Carrots. Mushrooms. Mini corns. Beans. Crunchy. Not soft. Sizeable chunks. Not minced or squashed. Nothing special about the stir fry (though a big ‘thank you’ to the brilliant cook who prepared it:) — but about Pádraig eating it today. A big plate. With no problems whatsoever.
During lunch, we watched self-made documentary. I had searched for “Into the Wild” on Netflix. What it threw up instead was this film called “Expedition Happiness” about a German couple and their dog renovating an old yellow school bus in the USA and driving it through Canada to Alaska and then back down to Mexico.
It sounds like everybody’s dream come true. It’s something I’d so much would like to do with Pádraig. In my mind, this would be the ultimate neuro rehabilitation journey. Participation. Integration. Thinking that, instead, we are struggling here every day, waiting for an HSE office that is waiting for another office to give the go ahead who, in turn, are waiting for another HSE office to agree to the go ahead, who, in turn, need permission from another level — sounds almost insane. And I’m not even sure if I have all the levels listed here — all that more than a year after the go ahead was officially announced by the Minister of Health himself as well as the HSE.
I had to think about our idea of going to Alaska.
Looks like we won’t be doing it this year. One of us here will have to get better first. But we will go.
“Strong. You can do anything. You can go anywhere. Money, power is an illusion. It’s up here. You can be here. Me and you.” (Christopher Mccandleuss)
PS: One of Pádraig’s friends called in this afternoon for a few hours. The second day in a row his friends were with Pádraig. It is truly outstanding how they keep in touch and maintain their friendship. Something that is probably more important to Pádraig than anything else.
Padraig. Beo and you were there minus parents/carers but just with your friends and others. Well done, The Irish language is important for our wee little Island. It is part of our history, culture, social being.
Your Dad sure must be a good cook. The meal looked delicious and I am glad you enjoyed it and the film also. Alaska … so very far away but who knows one day you and your Dad may be taking photos there and sending them back to the rest of us.
HSE: I don’t mean to always moan about their lack of performance but we know a young man, now a decade on, with schizophrenia. It took a lot of knocking on doors, emails, approaches to politicians, to try to get some input ie a carer to call to his home to ensure that he had the basics of clothes and hygiene, so we know a little about how non co-operative the bureaucracy monolith can be. I enjoyed the quote.
I am now sending you quote which I apply to the HSE by CS Lewis in the 1950’s. We have learnt so very little as yet but people like your Dad on your behalf Padraig and others like me and my partner KT can keep highlighting the need for urgent change so that rehabilitation programmes that are promised are put in place with near immediate effect.
. “I live in the Managerial Age, in a world of “Admin.” The greatest evil is not now done in those sordid “dens of crime” that Dickens loved to paint. It is not done even in concentration camps and labour camps. In those we see its final result. But it is conceived and ordered (moved, seconded, carried, and minuted) in clean, carpeted, warmed and well-lighted offices, by quiet men with white collars and cut fingernails and smooth-shaven cheeks who do not need to raise their voices. Hence, naturally enough, my symbol for Hell is something like the bureaucracy of a police state or the office of a thoroughly nasty business concern.”
[From the Preface]”
― C.S. Lewis, The Screwtape Letters
My mood is a little low today; a little tired but then we all have down days and up days so I will look forward to your WordPress tomorrow.
Michelle KT and Freddie (also on a down day; he is lying on the couch with his back to me)
Hi Michelle, KT and Freddie! Hope, you’ll have a better day today. I find good weather, or at least the lack of rain and dark clouds, helps to lift the mood. I understand what you are saying though, there are days when you wonder what is going on and for how long I can keep it up. That struggle. So, I try to find niches where I can have good moments, good company, good food, maybe just a moment of quiet and nothing. In any case, I didn’t know C.S. Lewis, at least I don’t remember him and his Screwtape Letters. They are now on my reading list. Imagine, he wrote that in the 1050s! He was wrong, though, in one point he makes: I could take him by the hand and show him the inhuman and degrading treatment the “Admin” inflicts on people. I could show them what it means if they delay treatments and positive action NOT because of lack of funding but because of the lack of a few SIGNATURES. I can show them what it the result is of them spending their days in MEETINGS which are all minuted rather than helping the people dependent on them. It IS outrageous but no-one is outraged anymore. — About ALASKA: it’s the furthest place away I can think of. It’s like a huge magnet. Pádraig and his friend had planned to follow the steps of Christopher McCandless (of “Into the Wild” in Krakauer’s book and the subsequent movie) before the accident happened. I have this dream of going on this trip with Pádraig and his friend. “Into the Wild” is his and my favourite film and book. When I feel a bit down, when I wonder whether all of this mess here is worth it at all, I think of this place where whatever you do, it’s your thing, it’s independence, it’s freedom (with nothing left to loose:). – Luckily, there are people who do not define themselves and others by money and power and business success. We are not alone. Your accounts give testimony to this. Thank you. Reinhard