I put my mind to it

Antaine ó Raifteirí

In Ireland, with Bríd’s Day on 01 February, spring has come. The passage from darkness into light. And one of the best known and most beautiful Irish language poems and songs about this time of the year is Cill Aodain (Anois Teacht an Earraig) by the blind poet Antaine ó Raifteirí (aka Raftery) 1770-1835.

Tony Breathnach writes that the poet announces that with the coming of spring and the days getting longer that after St. Brigid’s feast day he will start again on his travels around County Mayo, visiting places he names in the poem. Once he arrives in Cill Aodáin and is back among his own people, age will drop from him and he will be young once more. You’ll find an Irish/English language version here.

Now with the springtime
The days will grow longer
And after St. Bride’s day’
My sail I’ll let go
I put my mind to it,

(Thanks, Catherine, for reminding me of this beautiful poem.)

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Meredith Grey said in Grey’s Anatomy: You can waste your life drawing lines. Or you can live your life crossing them.

Whatever I choose, it is unlikely that I will change other people. It’s about myself, not others.

Or, as Rumi said: Yesterday I was clever, so I wanted to change the world. Today I am wise, so I am changing myself.

Which is not too far away from W. A. Ward: The pessimist complains about the wind; the optimist expects it to change; the realist adjusts the sails.

There is a big picture in the An Saol Centre with a similar quote: It is the set of the sails, not the direction of the wind that determines which way we will go.

In summary: you can take responsibility and initiative, or you can go with the flow and stay within those red lines drawn by others. You can try to change others (and go crazy in the process), or you can change yourself and be wise (and happy).

The story of the Blind men and the Elephant once taught me how people can disagree profoundly about the same subject, just because of their different perspectives. Seen in isolation, they are all right. Mostly, because they can not see the elephant in the room.

Rather than wasting energy on the impossible tasks to convince ‘the blind men’, it’s wiser to change myself, to cross red lines, to adjust the sails.

Of course, I’m hoping for a movement, for something like Arlo Guthrie described in Alice’s Restaurant (warning: the song is from the 60s and contains some non-pc language) where he recommends to his audience what to do when they are examined to be conscripted to fight the Vietnam war.

You know, if One person, just one person does it they may think he’s really sick and
They won’t take him. And if two people, two people do it, in harmony,
They may think they’re both faggots and they won’t take either of them.
And three people do it, three, can you imagine, three people walking in
Singin a bar of Alice’s Restaurant and walking out. They may think it’s an
Organization. And can you, can you imagine fifty people a day, I said
Fifty people a day walking in singin a bar of Alice’s Restaurant and
Walking out. And friends they may thinks it’s a movement.

And that’s what it is, the Alice’s Restaurant Anti-Massacre Movement

Let’s all go to Cill Aodáin and be back among our own people. Age will drop from us and we will be young once more.

Maybe even Forever Young.

We are here to laugh at the odds and live our lives so well that Death will tremble to take us.

Charles Bukowski

This week, I had plenty of reasons to laugh. It doesn’t happen often enough.

I went to my Vaterland to visit two Neuro Rehab Centres. More about these later.

The first thing I notice each time I go back to Germany is that my pocket gets heavy with all the coins. Germans haven’t taken to credit cards. They use money. And they charge you what the items you buy costs. None of that up-rounding to the next 10 cent. —Carnival in Germany starts on the 11th day of the 11th month at 11:11 hr. So, when you go into one of those local pubs (Eckkneipen), you’re likely to meet a funny-dressed carnival prince or princess. — You can open windows in hotel room, even on the 5th floor! — Surprisingly, some coffee machines let the cup overflow, even if you go for the mid-sized coffee. So much for “Vorsprung durch Technik”. — Less than a minute after breakfast TV had reported on the asteroid that had passed very close to Earth the previous night, and joked about what could have happened – a technical fault first showed the test picture (I hadn’t seen that since I was 10) and they were taken off the air. — Finally: everything is taken very seriously, including the energy crisis. Some department stores have taken their moving stairs out of use to preserve energy.

There’s so much more. Even in just a day. Even on the day of my arrival when a young police woman was incredibly cranky telling me that she was having a really shitty day. And that it didn’t look like as if it was getting any better.

Welcome to Germany!

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Once back into the Vaterland, I realised how much I miss it. Especially when I visited two privately organised Neuro Rehab Centres. They are run, in very different ways, by people with a passion for what they are doing. In one of them I saw what we should be aiming for in Ireland. The range of services is endless: from the ‘classic therapies’ (physio, ergo, speech & language) to robot-assisted gait training, upper body/arm/hand/finger training, rehab sports, medically guided fitness training, Neuro Psychology (including cognitive therapy), social (care) services, case management, and transportation – all coordinated by Neuro and Rehab Consultants. For daily rates of less than 200 euro to the various cost centres, from public insurers to insurers covering work accidents (Berufsgenossenschaft or “BG”).

People were incredibly dedicated to what they were doing. They had a deep knowledge of new developments and approaches. Mirror Therapy (“Spiegeltherapie”) and a gadget called HandTutor especially took my attention.

In an hour, I learned new things about the Lokomat and had tried out a brilliant new walking aid.

After 4 hours of conversations and walk-throughs, my head was spinning.

The generosity of the people who met me, taking their time and sharing their knowledge and expertise was incredible.

This is where Irish politicians should go to see what is possible and realise that spending money on Neuro Rehab is not only a human right that needs to be inshrined in law, but that it is also much less expensive than paying for regular hospital and intensive care stays of people who are literally forgotten about – not unlike those mentioned in the recent interim report by the mental health commission.

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Before all that happened, Pádraig had the biggest smile of us all when he tried out the new design based on the HandScupe, prepared by a UCD PhD student who has been working on this project for some time. He was incredibly engaged and demonstrated to all around how well he is able to use all the fingers of his left hand to play music.

And if he can move his fingers to play that synthesiser, and if the Scupe was connected to a different interface, nearly anything should be possible.

A big laugh at the odds!

I’m older than I’d like and I’m creaky, but I’m doing alright.

David Crosby

He forced his fellow Byrds to listen to a collection of Ravi Shankar ragas and John Coltrane’s Africa/Brass over and over again while touring the UK: the two albums inspired the groundbreaking Eight Miles High, widely considered to be the first psychedelic single ever released. He was also the Byrds’ most enthusiastic chronicler of the LSD experience, which informed the frantic I See You and the suitably dazed-sounding What’s Happening?!?! on 1966’s Fifth Dimension – writes Alexis Petridis in The Guardian.

Eventually, the Byrds fired Crosby.

This week, Pádraig used his voice forcefully and purposefully and on cue. Clearer and louder than ever, and without a trigger like a cough, he repeatedly said “Ya“.

The enourmous difference such a short word would make in his life. How differently people would perceive him having a voice. How much more empowered he would be and feel.

Here is a picture from the week before last. Pádraig’s PAs took him out for a late Christmas and New Year Lunch.

They had burgers and a curry, except the man himself who went straight for the steak. If you think about all the things that went on that day: being able to go out by himself with people of his age; ordering food and drink (he had a coke:); eating and drinking in company; tons of banter.

It is also so nice to see that his friends are making time for visits, now that the pandemic is more or less over and visiting becomes easier. Nothing like a bit of a catch up on what’s happening.

During the day, he is working more with his upper body using resistance bands.

He is also helping significantly more with his upper body when sitting up in bed, and is helping, occasionally, positioning his feet in the right position before standing up. Something to improve and work on. We were thinking to use the arm trainer of the MOTOmed more often and more regularly. Having better head and upper body control would make such a difference.

When I was reading Alexis Petridis article about David Crosby, I learned that, “by all accounts, including his own, David Crosby could be a tricky and difficult character. His career was regularly punctuated by angry arguments, bitter fallings-out, sackings, general discord. Joni Mitchell once waspishly suggested he was “a human-hater”. His former bandmate Roger McGuinn described his behaviour while a member of the Byrds as that of a “little Hitler””. – “I was a thorough prick”, Crosby said of himself.

I like his music. Today, I listened, for the first time, to his song What’s happening ?!?!

Crosby’s music is great and it will outlive him for a long time.

It’s Jimi’s song, I just wrote it.

Bob Dylan

46 years ago, Jean-Michel Jarre published Oxygène IV, one of his most successful singles. His latest, 22nd, album is called Oxymore, recorded using multi-channel and binaural rendering for spatial audio distribution technology. – WHAT is that???

Jarre was also involved in the design of a new underground concert venue in Paris with 171 triangular prisms that can reflect, break or absorb sound, depending on the desired sound effect, produced by 339 loudspeakers. Performers can thus change the sound experience from that in a cathedral to one in a small kitchen. An incredibly technical and advanced installation for the most incredible concert experience.

In an interview with German Radio, 74 year old Jarre says that stereo will soon become as obsolete as gramophones and there will be 360o space for music in all spaces that we move in, including cars. While many of his concerts were, so far, in addition to the music, also huge visual installations, he now asks his audience to close their eyes and produce the cinema in their heads.

Truly amazing technological changes are happening in the way music is offered to us.

But the experience of creating pictures in our mind while listening to music isn’t really new or as revolutionary as Jarre seems to believe. I frequently close my eyes when I listen to music. Many people I know do. That is one reason why music is so powerful. We can interpret it and create our own different experiences with it.

Even with one song when it is performed in different ways by different artists. Like the song that captures a conversation between a thief and a joker, written by Bob Dylan, but really made famous by Jimi Hendrix. All Along the Watchtower is one of my favourite songs. I would struggle to explain why. Although I understand the words, I couldn’t explain their meaning. It just resonates with me. And I’d agree that it is probably more Jimi’s than Bob’s song. For no reason. It just feels like it.

You don’t even need music to create your own experiences. Sounds can do it. Smells, touch and textures.

A bit like this morning’s experience out in town. It wasn’t the breakfast, pretty standard sausages, toast and eggs, that made the morning special and truly enjoyable, It was the sun flooding the Dunnes Stores café with light, the warm sun touching our skin. It was the sound of the voices in the background and the clicking of the cups and the cutlery reaching our ears. It was the smell of food, people, and very different surroundings getting up our noses.

I’m sure we had different experiences and were in different ways receptive to where we were and to what was going on around us.

In a way, it was like a song, like music, that we listened to, sometimes with our eyes closed, producing the cinema in our minds.

Enjoying that song that was written for us by others.

Resilience is accepting your new reality, even if it’s less good than the one you had before. You can fight it, you can do nothing but scream about what you’ve lost, or you can accept that and try to put together something that’s good.

Elizabeth Edwards

There are a few things wrong with Elizabeth Edwards’ view of things. For example: I don’t think you have to, or even can, always accept a new reality – but you can learn to live with it; then: it’s hard to say if a new reality is less good rather than, in a strange and surprising way, maybe even better than the one we had before, or we expected for our future.

But she is right when she says that there is no point in kicking and screaming about something we won’t be able to change; that we should make the best out of what we’ve got – which mightn’t be as bad as it seems at first sight.

Pádraig received a late Christmas present, a cool t-shirt with a saying in Irish written on it, when he came back to the An Saol Centre after Christmas. He smiled and was as happy as I had seen him in some time. It was contagious. No words could have expressed a warmer thank you, gratefulness, and appreciation. Here were people who mattered to each other. They were deeply connected and understood each other without a word spoken.

During the week, I came across another quote I found tremendously funny. It’s by Gillian Flynn who wrote Dark Places. It describes in a brilliant way how we should deal with situations and people who cause us trouble for no reason; who do not connect with us at all; who completely lack common sense and seem to thrive causing havoc in our lives.

I am not angry or sad or happy to see you. I could not give a shit. You don’t even ripple.

While I like the attitude, I haven’t managed to practice it fully. People and their actions still ripple for me too often. But I’m working on it.

Like the lack of respect, the lack of care, the lack of common sense so blatantly evident in the treatment of those who cannot speak up for themselves.

And my inability to change any of it.

Thing is: those ripples are distracting, to say the least. At times, I find them infuriating. `They always suck up our energy.

A doctor throwing bones from their patient’s skull into the bin and sharing that with his patient’s parents. A rehabilitation expert asking for evidence of the benefits of physical exercise. A minister not answering letters and messages sent to them. A physiotherapist saying that a wheelchair for a patient in their care should not be provided because of the severity of their injuries. A judge resolving differences between a family and a care facility by making the family’s child a ward of court, removing all rights from the child and the family.

We should not be angry or sad, and surely not happy, to see them. We will never change them. Any time spent trying to make them see reason and justice are a waste of time. They should not even ripple.

Instead, we should do the best we can for those we live with. Spend our time, efforts, and energy for their benefit.

Yesterday was, for a while, a really nice sunny winter’s day.

It’s Swan Lake in Dublin. In this case, the Royal Canal.

No ripples.

Just the Auld Triangle going jingle jangle all along the banks of the Royal Canal.

If we believe in nothing, if nothing has any meaning and if we can affirm no values whatsoever, then everything is possible and nothing has any importance.

Albert Camus, The Rebel

No better way to begin the New Year than going out to the 40 Foot for a dip. We thought. In the old year. Really good idea.

In the New Year, on the water’s edge, we nearly had second thoughts.

It just felt unbelievably fantastic when we got out. Pure beauty.

Best thing I’ve done this year.

If I didn’t know before, I learnt it today: there’s nothing you can’t do.

We didn’t go for a long swim. I just dipped in. There were boundaries dictated by the swell and the currents. But that was ok.

No need to worry. Everything is possible.

You can feel the happiest in the freezing cold.

So good that we thought: why just do it at the beginning of the year? Why not more regularly?

Live a happy life, forget about those tired old New Year resolutions you’re renewing every year. They don’t have any meaning. Nothing has. Then everything is possible.

I’m feeling good about life and our way of living it.

Happy 2023!

Can we move the Japanese Ambassador to four o’clock tomorrow?

The Prime Minister (Hugh Grant) in: Love Actually

This is my favourite scene in my favourite Christmas Movie. Dance as if no-one was watching.

Another scene I like is Karen’s answer to her daughter’s revelation that she is going to be one of the lobsters in her school’s nativity play: she asks her, somewhat incredulously, whether there were really more than one lobster around when little Jesus was born? – Her daughter has no doubt that there were several. Why else would they have the lobsters in the nativity play?

There are no limits to creativity and to imagination.

We were all a bit tired this week and somewhat under the weather. So rather than having the session in An Saol, Conor came over to the house and tried out mark 2.0 of the enhanced handshoe mouse with Pádraig.

I think that he is on to something quite extraordinary.

I think that there are few people who really have a wonderful, peaceful, happy and relaxed Christmas.

Christmas brings families together for days who normally would not spend more than a couple of hours together. Christmas is a very sentimental time when it’s easy to think back and remember times that were always so much better, so much easier, so much safer, and so much happier than the times we live in now. When people were around who looked after us, made us feel safe, loved us to bits, and took us the way we are. Nonetheless –

I wish you all a very Happy Christmas and a peaceful New Year 2023.

Thank you for all your support, love, friendship, and fun.

We made this year. We’ll make another one. Together.

And if it all gets a bit too much, we’ll just move that meeting with the Japanese Ambassador, or with whomever, from tomorrow afternoon to some other future date. Actually.

Friendship improves happiness, and abates misery, by doubling our joys, and dividing our grief.

Cicero

Pádraig was able to invite his friends again this year for a Christmas get-together last night, for the first time in three years. And the evening was magic, for all who joined in. There were nice drinks, nibbles, and even songs shared between all.

Last week saw another highlight. We had organised a DEXA scan, a bone density scan, that is needed to start treatment against bone loss and osteoporosis. People in wheelchairs are at great risk of osteoporosis. Neither Pádraig’s GP nor ourselves could believe when the results came back as normal. Continue with the calcium supplement and whatever exercise he is doing in An Saol was the advice of the GP.

Extraordinary.

Pádraig and I gave our first joined presentation last week at the Mental Health Commission’s first HR Training Day. We were ‘amateurs’ amongst the ‘professionals’ and the only representatives of the people the MHC was set up for. We weren’t told why, but my guess is that it was because of Pádraig’s involvement in the MHC’s and the Decision Support Service’s (DSS) public information campaign.

Our hope was to demonstrate the importance of the DSS for us and the importance of the very long overdue commencement of the 2015 (sic!) Assisted Decision Making (Capacity) Act.

I hope we were at least partially successful.

I promised Pádraig and the audience that next time, he would have a more active involvement on the day.

Pat and I had been looking for cheap flights to Spain and found one on Ryanair to Lanzarote.We staid there for just two nights and experienced what we nearly cannot experience anymore, although we tried very hard.

Perhaps it is impossible trying to escape to what very much seemed to be unreal. With other people who seemed to be unreal.

It was a bit like watching a movie. Long-ish, yes, but we knew it had to end soon.

The warm weather, the warm ocean, the extraordinary sunsets, we, all on our own, were never really on our own. It’s hard to describe but you might know what I am talking about.

Friendship improves happiness, and abates misery, by doubling our joys, and dividing our grief. The old man got it right

The best way to predict the future is to shape it.
(Der beste Weg, die Zukunft vorauszusagen, ist, sie zu gestalten.)

Willy Brandt (1913-1992

That requires initiative, a sense of responsibility, curiosity, energy, risk-taking, and courage. Maybe a sense of humour. Definitely inclusion and participation.

Pádraig is shaping the future of inclusive and participatory life and living for people who have suffered a devastating brain injury. He has demonstrated that what is normal for healthy people can also be normal for those whose life plan was adjusted.

Thinking about it: have you ever noticed that most things we don’t even think about anymore all of a sudden become very special, even exceptional or impossible to pursue, once someone with a severe brain injury wants to claim it?

Like

• Physical Activity – the Romans knew: mens sand in corpora sano; the World Health Organisations knows that everybody should do at least 150–300 minutes of moderate-intensity aerobic physical activity.
• Risk Taking – jumping off a cliff with just a rubber band on your ankle, diving with sharks, or climbing up some of the highest mountains on earth without oxygen are all accepted risks for fit and healthy people; they are being admired for being so brave to risk these mad adventures
• Games – one of the world’s biggest industries where people experience adventures not easily accessible to them otherwise, like flying a plane, climbing a mountain, or driving a really fast car using virtual or extended reality.
• Music – brings back memories, motivates you, relaxes you, helps to concentrate, makes you move and dance
• Tastes, Smells, and Texture – all those sensory experiences, memories and expectations of far away places, summer holidays, winter walks, the wind in your hair, the rain on your skin
• Company – being with your friends, meeting up, getting to know new people, being with people of your age, sharing your interests with them

BUT

If you suffer a serious accident and suddenly cannot pursue and experience the above anymore on your own, require support, then, all of a sudden, you need scientific evidence-based studies to prove that it is in your interest to continue doing what you always did and what others do every day.

Seriously.

And it’s getting worse.

If those experiences and activities are not described in government or health services strategies then pursuing them won’t even be be considered anymore by the system that you thought was there to help you along when you needed it.

How do I know this?

I didn’t until I was told last week by international (and national) expert evaluators of the An Saol Foundation’s Centre.

And until I spent three days at Germany’s biggest, most prestigious and most important Neuro Rehabilitation Congress.

Without a person affected, a rehabilitation customer, a service user, in sight.

It was “all about me without me“.

However, I also made great new contacts, interesting new friends, and learned about new products and publications.

It is clear, though, that Willy Brandt was right.

The best way to predict the future is to shape it.

In fact, the only way to look forward to a future where it is not the exception, but the norm, that those whose life has changed from literally one second to the next, will receive the support and services they need, as a matter of course, to do what is natural for us and what was natural for them before their accident – the only way towards this future, is to shape it ourselves.

I am not what happened to me but what I’ve decided to be.

Ich bin nicht das, was mir passiert ist, sondern was ich beschlossen habe.

Carl. Gustav Jung

Sometimes, I’d like to be on my own. Say goodbye to all those annoying circumstances and people, and live in a cave or on a mountain or on a desert island. In quiet.

At times, that feels like an attractive option.

Sometimes, I blame others, the world, and the universe for how disorganised, selfish, non-caring, and ignorant they are. I question how God can possibly allow people to kill each other on an industrial scale or ignore the terror inflicted on people who have suffered horrific injuries.

Blaming others, projecting blame, is Psychology 101 taught to every first year psychology student, a friend who is in the know once told me. Apparently, it’s something we all are prone to do.

Sometimes, I just feel like giving up, giving in. Eat ice cream, have a glass of wine, doze off

But – and I bet you knew this ‘but’ was coming – there are times when it becomes crystal clear that it is much more exciting, much more energising, and much more impactful to find strength in community, to take responsibility for who you are and how you live, and to lead an active, healthy life.

Last week was one of those occasions. Here is why.

We were at the An Saol Foundation’s first ever Advent Fest of Hope and New Beginnings with about 80 friends of the An Saol Foundation. A fabulous evening hosted by the Lord Mayor of Dublin Caroline Conway in the Oak Room of the Mansion House. In her welcome, she praised the work of the An Saol Foundation, the families and the staff, who, she said, finally were offering those with a severe Acquired Brain Injury an environment for Life and Living with their injuries.

Some of Ireland’s finest musicians created a truly magic atmosphere, including members of KILA, Paul Noonan of Bell X1, Matiú Ó Casaide and the Crew of the Dreamboat. The families really enjoyed a night out getting into the pre-Christmas spirit.

There was outstanding physical exercise for Pádraig on the rings and using an expandable rope that he used for ‘rowing’ like an olympian. It’s an exercise you might do in a gym yourself. For someone like Pádraig it is still very special, something that not many physios would help him to do. Incredible but true. He will make this un-special, another ‘normal’ exercise for him to do.

And then, there was Pádraig’s first day of paid employment since his accident – about time, you might say. Taking into account that he is now over 30, he should really start making a bit of a living for himself, wouldn’t you think?

Sometimes, the world seems to collapse around us and we feel as if all agency was removed from us.

But then, there are times when we feel that we are not what happened to us but what we’ve decided to be.

Last week, there were times like these.

With a little help from our friends.