And these children that you spit on as they try to change their worlds are immune to your consultations. They’re quite aware of what they’re going through.
David Bowie, Changes

10 years ago yesterday, David Bowie died. It literally feels like yesterday, not like 10 years ago.

A little after his death, a clever writer came up with a headline commenting on the ‘vandals’ who ch ch changed the name of the Austin street named after the Alamo fighter James Bowie to “David Bowie Street”.

I never really got Bowie. He probably never fully understood himself.

I liked that he was different. That he wanted to be different. And was not afraid of it.

I don’t know where I’m going from here, but I promise it won’t be boring, he said of himself. And, If it works, it’s out of date.

I once listened to a discussion on the radio where one of the participants insisted that performers were always at their best when they were authentic, just being themselves.

To which the other participant answered that he wasn’t too sure about that, because Bowie was at his best when he was a starman.

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There were a few other anniversaries last week. On Tuesday, 7 years ago, things could have gone very wrong for myself. On Wednesday, 11 years ago, a courageous young doctor took out Pádraig’s tracheostomy and allowed him and us to stay in their hospital rather than us having to return to the rehab hospital where they had made it very clear to us that if if the tracheostomy was removed, Pádraig would most likely either respirate, get pneumonia, and die – or choke and die.

Last week, I had a long conversation with the mother of a 21 year-old woman who is currently in hospital in the U.K. having suffered a devastating brain injury. What she shared about the deterministic nihilism of the doctors in relation to her daughter’s right to her life was terrifying. Much of what we had been told in the early days. And what has been happening to so many other families we have been talking to. These conversations, if you can call them that, have to be taken out of hospitals and be made public.

While the doctors and nurses seem to think that their attitude is correct and works – it certainly, and at a minimum, is outdated and unethical. What amounts effectively to involuntary, passive or active, euthanasia to save ‘valuable resources’ or is done in the ‘best interest’ of the person concerned cannot be justified. Ever. Under no circumstances.

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Pádraig got new socks (from ‘In Bruge’) from a friend. He continues to play the tin whistle (with a little help from a musician). He is actively standing nearly every day (proudly displaying his t-shirt with the quote by one of the last inhabitants of the Great Blasket Island). And above all, he keeps smiling.

There’s a starman waiting in the sky
He’d like to come and meet us
But he thinks he’d blow our minds

Next weekend, Pádraig will collect his new wheelchair, just north of Hamburg, if all goes according to plan. It’ll be a bit of journey but hopefully worth it.

So many people, family and friends, have helped to make this happen, with invaluable advice and with offers of incredibly generous financial support. None of it coming from the health system. Systems have their own dynamic and interests. Often very different ones from those of ours. Of Individuals. Who need help and support. Of system and nihilism deniers. Lighthouses. Trailblazers. Who inspire us, who blow our minds, each and every minute of each and every day with their resilience, determination, their love of life, and their happiness.

Ch ch ch changes, turn and face the strain. Oh, look out you rock ‘n rollers. Time may change me.
But you can’t trace time. Strange fascination, fascinating me. Ah changes are taking the pace I’m going through. Oh, look out you rock ‘n rollers.