Sometimes you have to go completely crazy to get a handle on things.
Steven Magee

Sometimes you do, as Steven Magee says, have to go crazy to get a handle on things. Sometimes you don’t. But it still takes more than the obvious.

There are three ways to use the handle on the arm trainer of a MOTOmed. For someone like Pádraig with (still) little upper body control, the obvious was to us an attachment that holds his lower arm in position and fixes his hands to the rotating handles.

That turned out to be a bit difficult because he (still) has a slight problem stretching out his left arm.

So we tried the ‘hand-shoe’ variant. Much better – but still a bit problematic because at times he pulls his hands and arms towards himself, lifting the MOTOmed up and bringing it to a halt displaying ‘spasm’ detected.

Then someone real smart started to think a bit out of the box and took away that stuff and just invited Pádraig to hold on to the handles himself, without any of the support and hand-shoe ‘restraints’ aimed at helping him.

And voilà, it worked – with just a little manual support for his hands when needed.

The strap-ins designed to help him to hold-on to the handle bars in fact restricted his movements and ‘encouraged’ him to pull his hands and arms away towards his body, making the upper body, the arm trainer, very difficult for him to use.

Allowing him the freedom to interrupt his use of the arm trainer by allowing him to pull his hands and arms away from the bars when he wanted to do that from time to time, relaxed him and made the exercise a near doddle for him.

Sometimes, you don’t have to go crazy to get a handle on things. Sometimes thinking out of the box is sufficient.

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I was trying to do that during the week in a meeting in Leinster House, the seat of the Irish parliament, between member organisations of the Neurological Alliance of Ireland (NAI), clinical leads of the HSE, and politicians.

There is a national programme in place, supported by all, to set up Neuro Rehab Teams in all of Ireland’s different community health areas. Nobody in the room could explain, why this has not been done yet. Because it is so badly needed.

I felt like standing up and shout loud out: Get a grip. Get a handle on this. Who, if not us, will have to make this happen.

Sometimes, you have to go completely crazy to get a handle on things.

That day, I wasn’t sufficiently crazy.

Nobody was.

Which is an altogether sad affair.

One thing happened that brought smiles and laughter to nearly everybody. Snow.

Adults became children. Building snowmen. Throwing snowballs at each other. Even Pádraig tried to throw a snow ball at one of his therapists. It was a brilliant attempt, but he will need to practice a bit more.

And he will. When and how he wants to.

Without any ‘helpful’ restriction.

It is one of the blessings of old friends that you can afford to be stupid with them.

Ralph Waldo Emerson

It’s one of these nights you wish it never ended.

I am in Dortmund. Although the city feels run down, dirty and overrun, it’s home to me. I met up with old school friends and we were planning, well talking about, the 50th anniversary of our ‘Abitur’, or Leaving Cert, in a few years time. Would we try to do something special in Dortmund? Would we re-live one of the school trips we went on when we were still together in school? Or organise something completely bunkers, mad, insane, and different?

I was thinking why we were interested in doing anything together at all? We really don’t know much about our lives. Yet, we like our company.

I have no idea why Dortmund attracts me. I have no idea why I enjoy the company of people so much who I only see every couple of years?

Maybe there isn’t any reason. Maybe it cannot be explained. Maybe there isn’t any need to explain it.

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I might have mentioned at some stage that I wanted to write a book about what happened to Pádraig. There are so many approaches to the idea and I never could make up my mind.

This morning, this very early morning, sitting on the plane to Düsseldorf, I had what I think is an idea. I will use the title of songs to structure the book. Like: Forever young. Skyfall. Wake me up. This is me.

I have thought about June of this year. It’ll be ten years since Pádraig’s accident.

Is there any point in trying to explain to anybody what that accident and its aftermath did to Pádraig and us? Going back to Cape Cod. Inviting to meet the driver, Mr Couto, to meet us?

There is a sadness and a horror that is not just in our minds but in our bodies. It’s physical. There is also a purpose and a power, a love, commitment, and deep friendships, we’d never have experienced if life had been ‘normal’.

There is nothing we can change about what happened.

There is much we can change in the way we deal with it.

Even if I walked on water my critics would say: what an idiot. He can’t even swim. (Selbst wenn ich übers Wasser laufen könnte, würden meine Kritiker sagen: was für ein Idiot, der kann ja nicht mal schwimmen.)

Berti Vogts

Hybris, in Greek tragedy, is the overweening presumption that leads a person to disregard the divinely fixed limits on human action in an ordered cosmos.

Vogts is a famous German soccer player who, in his later years, coached the national teams of Germany, Kuwait, Scotland, Nigeria, and Azerbaijan. In that order. He is 77 years old. It’s not known yet how the Gods will punish this mortal for his hybris.

The world is full of people full of hybris. People who believe they can take over other countries by terrible, deadly force; only accept the results of democratic elections if they get elected themselves; blame fate instead of their shady friends if houses collapse during earthquakes, houses built on greed, instead of solid ground; actively kill or passively ignore the desperate plights of those who don’t share their believes; lock away people who don’t dress as they should, who don’t love as they should, who don’t conform as they should; allow people to slowly and painfully fade away just because they have a brain injury; those who are convinced they know everything already. Fundamentalists of sort.

It’s reassuring that the Gods will take care of them.

Even if they think they can walk on water.

Trinity College Dublin invited Pádraig last Monday to celebrate with them 10 years of the ‘Irish Room’ in the College. Pádraig had fought long and hard, and very successfully, to have not just bilingual sign posts in the College but also a Seomra na Gaeilge where Irish language speakers on campus could get together.

Some of his friends were there, the Provost of the College, the Irish language officer, and current students. He went with his sister and friends while we went into town to do some window shopping.

Next thing, we got a call to say that Pádraig’s chair did not fit through the door.

Here is what I found afterwards on TCD’s website, some of the few English language descriptions in the otherwise Irish language section of TCD.

The Room is located in the Dining Hall building, over the Buttery restaurant (on the top floor). Please go around the right hand side of the Buttery on the outside (past the tennis courts on Botany Bay) and enter through the wooden rear door at the back of the building. Go up the stairs to the very top. See images below.

Obviously, they had overcome the problem with the stairs but had ‘fallen’ at the last hurdle. By the time we got back to TCD’s main square, Pádraig had managed to get into the room – by whatever means.

At the time we didn’t ask. But later it transpired that the College had called a carpenter at home and had asked him to come in to fix that door. I think, they took out part of the frame.

I am not sure whether it was because of his quite dramatic entry or because he got so many mentions by the speakers, or maybe both, – he had an absolute ball and one of the best nights since his accident. Most importantly, we weren’t around, he did not need us at all. It was his gig with his friends.

After Pádraig and his friends had practically kicked in the door, or was it just the frame?, they had a few hours of celebrations, speeches, and good company.

Pat and I went to the Bank, a nice pub in town, had a drink, something small to eat, listened to Bob Dylan and Neil Young, thinking how strange it was to hear them playing in a building that had been converted from a bank into a pretty swanky pub. We also noticed how unusual it was for us to go out on our own. Anywhere. And whether it was as hard for Pádraig as we imagined it, to get to this room with is friends. Maybe it was harder for us to think about ‘all this’ than it was for him to do it.

I think in the end, we all had a great night to remember.

The week went by with Pádraig making great advances with his head control. I had noticed during transfers that his head is no longer as ‘loose’ as it was after his accident. He still struggles, but he can now hold and turn his head for several minutes with our any help.

On Saturday, the three of us went to IKEA to buy some small things. Pádraig had a few of the famous meatballs with noodles and tomato sauce in what must be the country’s largest sit-down indoors restaurant. The bill came to just over 13 euro. For the three of us. We felt we had got a good deal.

I kept the best for last.

One of Pádraig’s best friends, Andrew, sent this around during the week. – PLEASE READ

Dear friends and supporters of Pádraig

The time has come

Seo muid réidh!

10 years on from Pádraig’s accident and 3 years on from the original planned date, We will finally be completing the hike up Croagh Patrick in aid of Pádraig on Saturday 06 May!
Everyone is welcome to come along, if you previously planned on doing the hike or if you’ve a new friend / partner that would like to come along too. The more the merrier!
The plan is just like before – We will hike at 11am on Saturday 06 May. A mini-bus/lifts will take people from Westport town out to the foot of the mountain and back after the post-hike music and pints session in Campbells, with Pádraig and family!
One change this time around is that we are NOT ORGANISING ACCOMMODATION for everyone. Westport town and district has a massive amount of airbnb, bnb and hotel accommodation, so please note that you do need to book your own place (though we will be organising a bus from town out to the mountain).
If you plan on doing the hike, please fill in this form by Sunday so as to help with our planning. Similarly, if you want to bring a new friend / partner etc. this time, please forward them this form and get them to fill it in too. https://forms.gle/invx1Mcpgo3S3Mv99 . If you are not free to do the hike, simply ignore the form.
Finally, Oisín managed to get our original fundraising page back up and running (well done, folks, you raised over 18k without so much as taking a step, the last time!). So that means that all of your individual fundraising pages that are linked to the central event (Cruach Phádraig do Phádraig) are active again too. Obviously, you’ve probably already raised quite a bit for this event and we understand that we are unlikely to raise a massive additional amount, but if you would like to spread the word again and get further donations, please do! We will be doing a fundraising drive in the immediate run-up and during the event itself. If you want to set up a new page / if you have a friend that is now going to do the hike, you or they can easily set up an individual page that will feed into the main event’s pot by clicking on this link and clicking on the orange “start fundraising” button. Pádraig’s needs and expenses are as urgent as ever, so every cent is a great help. https://www.idonate.ie/event/cruachphadraig
Rather than choke up people’s notifications, please keep any queries to direct messages to me etc. I’ll be setting up a new (admin-comment-only, dont worry!) whatsapp group for this resurrected challenge in the coming days, when I know who is doing it! Grá Mór agus Beirígí bua!

Please fill in the form today if you intend to join to allow for the best possible planning.

If you cannot do it today, please do it as soon as possible.

https://forms.gle/invx1Mcpgo3S3Mv99

See you at the foot of Croagh Patrick on 06 May at 11am for the big climb!

Ní neart go cur le chéile

If you greatly desire something, have the guts to stake everything on obtaining it.
Brendan Behan

It was Brendan Behan’s 100th Birthday last week. Pádraig went to Glasnevin Cemetery to visit his grave. It’s the only grave always adorned with at least one pint (and the lady in the Gravediggers knows who looks after the grave so diligently).

We decided to follow his spirit and, on our way home, visit the Gravediggers, arguably Dublin’s oldest pub. They serve Dublin’s cheapest pints and – tapas. It was a really nice evening: with a bit of a Spanish flavour in one of Dublin’s oldest institutions

The reception in the Gravediggers was fantastic. Staff there were so helpful and kind that we will definitely be back there soon.

Tonight, I am tired. On the way back home this afternoon, our car broke down. Luckily, Pádraig was not on board and we were only one hour away from home. We had gone for a night out and away for a special occasion. Like many trip the two of us went on without Pádraig, this one too was challenging. The car broke down, the engine stopped, in the middle of the motorway. It seems to be very close to something that happened before: smoke from the engine, and then a complete standstill. We’ll find out soon whether it’s worthwhile to even think of a repairing it – or whether we should just go for a new old one.

That blue Kia Sedona really served us well. It would be a pity to just abandon it. Whatever will have to be done, will have to be done quick.

We have the guts to stake everything on obtaining what we really wish for. A proper car. A proper rehab routine. A proper life.

Oh –

I got older losing my hair
not many years from now but yesterday (when my troubles seemed so far away)
No one ever sent me a Valentine
but yes, birthday greetings bottle of wine

I’ve been out till quarter to three
no one locked the door
The question is:
Will you still need me, will you still feed me
Now that I’m sixty-four

One thing is for certain: You’ll be older too:)

I hope you’re having a good weekend. One day, we’ll celebrate together.

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.