Lauenstein

The German Lauenstein brothers won an Oscar for the best animated short in 1989, Balance.

It’s short enough to watch it.

It ends by all but one individual having fallen or been pushed off a platform floating in space. That one individual stands on one edge of the platform, the treasured music chest they have been struggling for on the other. The individual has eliminated the competition but cannot get to the chest.

He has to maintain the balance between himself and the chest in order to survive.

I couldn’t find online the “balancing act” sequence from National Treasure – Book of Secrets that was directly inspired by Balance.

There is a problem with balance: to maintain it sometimes you have to forgo what you yearn for.

We had a quiet Saturday yesterday.

We were talking and taking it easy.

Then we tried whether Pádraig could move his chair himself. Even over a short distance. Nobody likes to be pushed around all the time. Being able to decide independently when and where to go is huge.

He had been able to do this some time ago, of course. But then, while he was struggling with his right hip, this was too hard for his legs. But now he moved himself again.

First forward.

 

And then back.

 

I don’t think I can fully appreciate the sense of satisfaction, Pádraig must have got out of those short but independent moves. There is promise there. The promise to be able one day to go longer distances. To go where he decides he wants to go to.

We tested the outdoors. Getting ready for the pre-Christmas lowering of visiting restrictions and possible outside visits.

Someone with enough foresight had given this heater to Pádraig as a birthday present last May. It’ll come in really handy over the next few weeks and months, when people will hopefully be allowed to visit again – outside, with masks, and keeping their distance, of course.

I have been thinking about how to deal with really difficult situations. And ‘balance’ is what I came up with as the one thing that has to be at the centre of all considerations. When life gets out of balance we’ll eventually fall off the cliff.

Balance implies that we might need to give up something that is really important to us. That makes ‘balance’ somehow less attractive.

Why not have it all and have it now? Is balance not boring? Are compromises not for corrupt politicians? How can you ‘balance’ between oppressors and the oppressed? Should the killers be remembered on the same memorial wall as those they killed? Are there situations when it is worth risking to fall off the cliff, rather than trying to keep the balance?

The answer could be that risking to fall off the cliff means risking everything. That fall would mark the end.

Carl

Carl Fredriksen is old. So he is sentenced to sell his house and move into a nursing home. Like a good man. Instead, he escapes at the last minute by tying thousands of balloons to his house. Himself, the house, and a stowaway go Up in the air and on an adventure trip to Paradise Falls in the South American wilderness.

I mean, what is wrong with this guy? Why can he not face the facts? Does he not realise that what he is doing there is highly dangerous and certainly not in his best interest? Does he not see how irresponsibly he is, putting himself and others in danger?

It is society that looks after old and incapacitated people like Carl. There are rules. Rules that are, if necessary, enforced by the Courts in his best interest and for the good of society. Even if he doesn’t agree. Because he is old and has obviously lost all good and reasonable judgement.

Why did Pixar, surely aware of their own responsibility as a huge movie maker, decide to let this deranged old man escape and let him go on this incredibly mad, irresponsible and dangerous adventure trip instead? Do they want to encourage other people to do likewise, “follow their dreams” and probably kill themselves in the process? How is it that they were allowed to make this movie at all at all, show it all over the world, encourage this highly irresponsible behaviour?

Maybe they were just after the money. With a box office intake of $731 million, Up became one of the highest-grossing films of all times. People seem to like Carl’s idea of doing his thing.

Pádraig’s regular dentist retired. We had to look for a new one and found a “special care dentist” on the web who turned out not to practice anymore, except in the Dublin Dental Hospital. They said, Pádraig needed a referral and that there was a one year waiting list. We sent the referral but didn’t get as much as an acknowledgement.

Eventually, we found a dentist in the neighbourhood whose practice is accessible and who saw Pádraig within a few days.

I stayed with Pádraig for the consultation which took a full two hours. The dentist cancelled other patients he had lined up for that afternoon to get the two holes in Pádraig’s teeth fixed. Dentists are generally not people you’d like. But this dentist was incredible. Committed, professional, caring.

We had another good day last week. So good, we decided to go out for a walk and check out how Pádraig would like moving through An Saol’s car park standing up. He immensely enjoyed that. A whole different perspective.

I think we all need that from time to time: A whole different perspective. Doing the crazy, immensely adventurous thing.

We can do things. We don’t have to wait until someone does it for us. If we try, we generally find others who will join and support us on our journey. We can do more and better if we do it together. We have to get Up, accept responsibility, find like-minded people, support each other, and become the change we’re looking for.

The alternative is to live like Vladimir and Estragon and wait forever.

Theodore

You can’t eat money. Can’t buy me love. Not everything has a Price Tag. Money doesn’t care for me. Neither does the “click-clack” when Vogue Williams closes the box of Fairy Non Bio. Except that Vogue who always has Theodore’s safety in mind sees it differently:

“I make lots of little sounds when I care for Theodore. But there is one really important sound. That click-clack means that the Fairy Non Bio safety lid is shut. So Theodore is safe.”

I am so happy that Vogue always closes that lid. It’s so good to know that Theodore is safe and that we don’t have to worry about him. One person less to worry about. Brilliant. If you don’t do anything else, keep closing that lid for Theodore, Vogue.

Before Vogue explained to the world how much she cares for Theodore, the world only had heard about one other Theodore. 

Theodore Roosevelt.

He had one thing in common with Vogue: both of them said important things about caring. Roosevelt, like Vogue, has been credited with a great quote about caring:

People don’t care how much you know until they know how much you care.

In other words: knowledge is not worth a dime unless you care and you act upon that knowledge, use that knowledge to help others. Knowledge has to be applied to do good. For example, if you know there is a storm coming, you tell everybody to get prepared; if there is a virus, you wear a mask; if you loose an election, you concede; if someone needs help, you help and don’t wait for other to do their job.

Pádraig got some help this week standing and doing exercises. He is doing so much by himself. Just sometimes, equipment he uses needs to be adapted to suit his height. Like IKEA mats under his arms to take some of the weight that otherwise would be pulling his shoulders down.

After many hours of hard work, Pádraig eats more than most of us. He eats better and more regularly in any case. And he is eating food few if any people thought he’d ever get near to, such as nuts. Cashews are some of his favourites.

It gets sometimes lost in the busy-ness of the days: it is hard to believe how far Pádraig has come and how he has inspired people to get to the point where there is a rehab centre for people deemed by many not to deserve rehabilitation at all. Having the An Saol Neuro Rehab Day Centre up and running, working with motivated and experienced therapists and assistants supported by extraordinary equipment is little short of a miracle.

We know how much everybody in An Saol cares, and we care about how much they know.

Yesterday, I got a reminder of the futility of life (if that was necessary). A very good friend from my home town of Dortmund sent me a message about the passing of Fred Ape. He was about six years older than myself. His music was the music I grew up with. He wrote one of the songs that made Dortmund’s folk-rock group Cochise who lived very near to where I went to secondary school.

They were singing about justice, transparency, solidarity. One of their most famous songs, written by Fred, was “Smoke Signal” (“Rauchzeichen”).

The song is, they always explained, based on an ancient Cree Native Indian Prophecy.

“Only after the last tree has been cut down / Only after the last river has been poisoned / Only after the last fish has been caught / Then will you find that money cannot be eaten.”

How relevant this still is today is incredible. It made me think back some decades when it seemed perfectly possible that the good guys would be winning. When I felt carefree. Nothing really bad would ever happen to me. There was no end in sight. No rush. No need to deal with difficult people.

Rauchzeichen – Cochise

Wenn ihr den letzten Baum zerstört
Dem letzten Fluss die Klarheit nehmt
Den letzten Wilden habt bekehrt
Der letzte Vogel nicht mehr singt
Die letzte Straße angekommen
Der letzte Wald zum Parkplatz wird
Der letzte Krieg endlich gewonnen
Der letzte Strand mit Öl verschmiert

Werdet ihr erst dann einseh’n
Dass ihr euer schönes Geld
Auf der Bank nicht essen könnt –
Welch Menge ihr auch nennt?

Wenn ihr den letzten Fisch gefangen
Die letzte Erde aufgeteilt
Die letzte Bombe hochgegangen
Die letzten Ernten sind verseucht
Die letzte Mutter Kinder liebt
Der letzte Mensch durch Folter stirbt
Der letzte Gott den Segen gibt
Der letzte Hitler für sich wirbt

Werdet ihr erst dann einseh’n
Dass ihr euer schönes Geld
Auf der Bank nicht essen könnt –
Welch Menge ihr auch nennt?

Wenn das letzte Meer voll Abfall ist
Die letzte Erde ausgehöhlt
Der letzte Tanker langsam bricht
Das letzte Paradies zerstört
Die letzte Menschlichkeit besiegt
Das letzte Hochhaus hoch genug
Die letzte Lüge Beifall bringt
Die letzte Blume fault im Wind

Werdet ihr erst dann einseh’n
Dass ihr euer schönes Geld
Auf der Bank nicht essen könnt –
Welch Menge ihr auch nennt?

Werdet ihr erst dann einseh’n
Dass ihr euer schönes Geld
Auf der Bank nicht essen könnt –
Welch Menge ihr auch nennt?

Ape, Beck & Brinkmann
View All Credits 

Cash

“First make up your mind that this is what you want to do. Then keep trying. Because it could be the 97th time that you finally get a break.”

This was Johnny Cash’s answer in a replay of an interview on Irish radio when he was asked what would be his advice to an aspiring musician.

There’s another man across the big pond today who must be thinking along similar lines. Yesterday, he was third time lucky. Because he kept trying.

Much younger than either of the two was Kevin Barry, when he died exactly 100 years ago. Being only 18 years old he was hanged by the British during the Irish War of Independence. Last week, Pádraig went up to see his grave in Glasnevin. It was covered with flowers. He too had made up his mind and was not ever going to give up. He was killed but succeeded in what he wanted to achieve. And there is a rare Leonard Cohen rendition of the Kevin Barry song.

My phone crashed as I was taking pictures. The one above is the only one that wasn’t deleted.

Pádraig is enjoying his twice weekly visits to the hyperbaric chamber. He is crystal clear that it helps him to sharpen his brain and to develop his lungs and breathing.

Overall, and slowly, we are getting back towards a sustainable routine. During the week it’s like going to work: getting up at the same time, getting ready in time to leave, working hard in the morning, taking it a bit easier in the afternoon. It all still requires some fine tuning, but it’s all moving in the right direction.

It is amazing how important routine and social contacts are. Pádraig is happy that he is getting out of the house, getting good exercise, and getting to see different people (other than just us:) every day.

For some letter I had to write during the week, I went through papers and pictures I took during the time Pádraig was in hospital. The difference between him being looked after by others and living with us is breathtaking.

There is an article in The Irish Times from 20 May 2020, which I only saw last week: Nursing homes must be made a thing of the past. Really worth reading. Here are a few important quotes from that article:

On Friday May 8th, Leo Varadkar reflected aloud on the Late Late Show on whether nursing homes are a wise investment for the future. The Taoiseach is one of the first political leaders in the world with the political imagination to think beyond orthodox arrangements.

Living in these places makes it intrinsically difficult to physically distance oneself. Protecting the service personnel attached to them is also a major challenge. Living with any concentration of people categorised as “vulnerable” to the disease is a disaster waiting to happen.

And so, the Taoiseach rightly reflected on a future where we might have to rethink the wisdom of such settings and the wisdom of public investment in them.

He speculated that we may have to think about elder care along the lines of disability care where it has in fact been official Government policy since 2011 to end congregated settings for persons with disabilities.

The official ambition since 2011 has been to facilitate community living for all people with disabilities – regardless of age or severity of disability. More than this, the UN Convention on the Rights of Persons with Disabilities, which Ireland has ratified, recognises institutionalised facilities as a violation of human rights.

Well, as far as I know, Ireland is about to report for the first time on its implementation of the UN’s Convention on the Rights of Persons with Disabilities (CRPD) it ratified in 2018. There’s an opportunity for the politicians to highlight the disaster of the around 1,300 young people ‘held’ in nursing homes, many in breech of their human rights.

Pádraig has made up his mind. He will not give up. He will keep trying. One day will be his lucky day.

PS: Johnny Cash recorded many great songs. One of my favourites is the duet with Dylan in Girl from the North Country.

Harmonica

Harmonica: And Frank?
Snaky: Frank sent us.
Harmonica: Did you bring a horse for me?
Snaky: [Chuckling] It looks like we’re… it looks like we’re shy of one horse!
Harmonica: You brought two too many.

They were full of confidence, laughing at that one lonely Harmonica. But now, they begin to look worried. – As it is to be expected, a few seconds later, they are dead.

It’s the opening dialogue of Once upon a Time in the West. And it only happens after a seven minute long opening sequence with no words spoken at all. Do dialogues come any better than this?

The music (by Ennio Morricone) and the “shooting” of the 1968 movie (by director Sergio Leone) are as good if not better than the acting and the story line of this “spaghetti western”. It’s full of great one-liners, some completely non-PC nowadays, in a movie that follows Harmonica on his mission. He is a man of few words. He has focus. He has unfinished business. And a harmonica.

While Frank (and the viewers) are getting hints during the movie, we (and Frank) only learn at the end why Harmonica came to Flagstaff and after Frank. Eventually, Harmonica shoots Frank and stuffs his harmonica into the dying Frank’s mouth as a reminder of what he had done to him and his brother years earlier. And then? He rides into the setting sun. He’s done.

Leone liked to tell the story of a cinema in Paris where the film ran uninterrupted for two years. When he visited this theater, he was surrounded by fans who wanted his autograph, as well as the projectionist, who was less than enthusiastic. Leone claimed the projectionist told him “I kill you! The same movie over and over again for two years! And it’s so SLOW!” (from Wikipedia)


We had a few highlights and amazing “firsts” last week.

For the first time ever here, someone other than myself did a manual transfer of Pádraig (from therapy bench / plinth to wheelchair). It was absolutely brilliant. For me, it was an icebreaker.

And that was just the beginning.

We figured out how Pádraig could use a table standing up.

He won an arm wrestling competition against a formidable opponent.
(This is a snap shot of the arm of the opponent:)

He rocked like a waggon wheel and a spaceman at the turning point.


Last night was Halloween, the time when the dead become alive and go on scary missions. It’s scary, but it’s also great fun.

We’re moving slow. Maybe like dead men walking. Or like Harmonica. Maybe we’re scaring people at times. But we have focus and determination and fun. Unfinished business. And we won’t rest until that is done. One day, someone will look back and tell the story. “Once upon a time…”.

GratefulDead

This week, Pádraig received the most beautiful bunch of flowers.
Ripple in still water.

He is moving and controlling his legs again much better, even the right leg,
lifting them up to help
when we are putting the footrests on his wheelchair.
They are back in action.
Following the problems he had with that right leg over the past year and a half,
this is a big deal.
A very big, a very beautiful deal.

 

He is (again) cycling the MotoMed himself without the engine kicking in,
keeping a really good balance between the left and the right leg.
Unthinkable for many months.

.

 

Pádraig is alive and kicking and tremendously enjoying his regular exercise here in the house and in An Saol’s Neuro Rehab Centre, inspired by him.
This, too, is a big, a very beautiful deal.


Pádraig has been assumed to be close to death, to have been better off dead, to be dead.

And that is the answer to some of my most burning questions: why is there no place, role or provision for him, and others like him, in society? Why does society not offer him, and others like him, the same respect and opportunities as others to live their lives? Why are concepts such as equality, integration, and participation not applied to him, and others like him?

“Dead people receive more flowers than the living ones because regret is stronger than gratitude”, Anne Frank wrote many years ago.

I don’t know anybody who is more grateful for their life than Pádraig. So am I. Tremendously grateful for his life. And so is the HSE. They sent him the most beautiful bunch of flowers this past week, thanking him for his participation in their video promoting the 2015 Assisted Decision Making (Capacity) Act and his contribution to their recent event launching the video.

Here is the deal.

People and society cannot continue to look at Pádraig, and others like him, as if they were dead, almost dead, that they would be better off dead, that they should be dead, even Grateful Dead.

We need to start sending more flowers to the living. Create ripples in still water.

We need to be with the living. 100%.

Distance

From a Distance” is one of the most beautiful songs. Nancy Griffith sings it with one of the most beautiful voices. The world looks blue and green, there is harmony, there is a voice of hope and peace, and God is watching us from a distance.

Distance cancels out the small, little things. The fighting, the differences, the guns, the bombs, and the disease.

Distance is good because it gives us the bigger picture. We don’t loose the wood for the trees. Distance helps me to find a way out when I’m stuck, to find a new direction.

There was a time before the summer when I didn’t know what to do or where to go. There was the summer of distance, distance in many different ways. And now there is the autumn of “going forward”, even in difficult circumstances, but going forward, with confidence and determination.

We now know that there are steps to be taken, “going forward”. (Oh, how I hate that phrase when politicians use it as an empty shell!)

Pádraig has been “going forward” every day, leading the way.

 

“Distance” is no longer what it used to be. It’s no longer a choice. It’s necessary for survival. When you don’t keep it, it can make you sick and can kill you. But when you have to keep it unnecessarily, “just” because of your circumstances, it can make life, at a minimum, quite miserable.

It has been the official ambition of the Irish Government for the past nine years, since 2011, “to facilitate community living for all people with disabilities – regardless of age or severity of disability. More than this, the UN Convention on the Rights of Persons with Disabilities, which Ireland has ratified, recognises institutionalised facilities as a violation of human rights.” (Irish Times, 20 May 2020)

Yet, today, more than 1,300 young people with a disability are still looked after in a nursing home. Because of the pandemic, they are now locked away with no visitors and no direct contact allowed.

In addition, one sad reality during the pandemic has been that “a high proportion of deaths in Ireland (and indeed right around the world) have taken place in care homes. Living in these places makes it intrinsically difficult to physically distance oneself. (…) Living with any concentration of people categorised as “vulnerable” to the disease is a disaster waiting to happen”, say the authors, Gerard Quinn and Ann Campbell, in the same article.

And so, they say, “the Taoiseach rightly reflected on a future where we might have to rethink the wisdom of such settings and the wisdom of public investment in them.”

The Lady in Red must have spent hours getting ready for her visitors. Because she could. And wanted to look her best. She looks amazing. Her visitors more than appreciate her meticulous preparations. They smile, they wave, they take pictures.

She isn’t in heaven and she isn’t getting ready for Dancing Cheek to Cheek with Fred Astaire nor anyone else. She is in a nursing home, greeting her relatives from a distance.

Despite the appearance, this ain’t a happy picture. From neither side of the window. The smiles, the camera, the waves, the distance, are hiding the details of the misery. The distance here is imposed, it’s not helpful. The lady in red, as all the young people in nursing home, should be able to hug their family, to feel the warmth of their skin, to smell their breadth, to touch their hands – not the bold window.

How much longer will we allow the violation of the human rights of young people with brain injuries? How much longer will we allow these young people to be exposed to “the disaster waiting to happen” to them during this pandemic? How much longer will these young people be allowed to be seen only “from a distance”, through a glass window, by their families with whom they should be living in one household, safe, and “from a distance” from the pandemic brought into closely congregated settings?

How much longer will the government continue to fund these human right abuses instead of viable, appropriate, long-term alternatives?

Sometimes I think God could look a little closer, look not just look from a distance, to see the grey, hear the dissonance, and feel the desperation.

GimmeSomeTruth

John Lennon would have been 80 years old last Friday.

Had he not been shot dead 40 years ago.

Imagine.

Gimme some truth

I’m sick and tired of hearing things
From uptight, short-sighted, narrow-minded hypocritics

All I want is the truth
Just give me some truth

I’ve had enough of reading things
By neurotic, psychotic, pig-headed politicians

All I want is the truth
Just give me some truth

Which year did he write this song again???

Sounds to me like as if there’d be a good chance he’d be shot a second time one of these days had he survived the first attempt to kill him and had he continued to sing that kind of song.

This past week, Pádraig was back on his feet and back on the Lokomat.

I keep imagining. – Could Pádraig have been spared more than a year of deeply troubled nights and lack of sleep and what must have been at times excruciating pain?

A ‘good night’ before the intervention he went for recently meant he had slept continuously for a few hours, maybe five or six, and that was a rare occurrence. Most nights were not ‘good nights’. During those nights he slept maybe one or two hours, woke up for an hour or two, moved around in the bed in pain and went back to sleep for another one or two hours, because of sheer exhaustion.

We had to protect the sides of his bed with thick foam covers and close the gaps between the mattress and the bed side protectors with specially made foam covers to prevent injuries.

It must have been close to unbearable for Pádraig to be unable to get a good night’s sleep. It was extremely difficult for anybody staying with him for a night to see him struggling so hard, being unable to rest, pulling up his legs, especially his right leg, almost up to his chin, twisting his legs around each other, over time being unable to stretch out his right leg anymore because these movements had caused his right hip to sublux, pushing the head of the right femur (partially) out of the socket.

We asked everybody we could think of. Described what was happening.

Eventually, we decided that we had to go on a long journey to get Pádraig the help he so desperately needed.

Following his discharge from the rehab hospital in Burgau, we have been staying with Pádraig now for more than two weeks during the nights. He goes to bed in the evening. We help him to turn around twice or three times during the night. He wakes up in the morning. After a really good night of at least eight hours, and often 10 hours or more of sleep.

The difference between ‘before and after’ could not be bigger.

I keep imagining. What would have happened to Pádraig had we not taken him to see the specialists in Burgau and Munich, had we allowed his condition to gradually deteriorate? Had he not eventually received the necessary help by people who cared, and for whom Pádraig has the same right to physical integrity, to his health, as you and I? Who treated him with ‘dignity and respect’? Who took a ‘patient centred’ approach? Who did not discriminate because of an existing condition?

Is not knowing as bad as not acting despite the knowledge?

I’m sick and tired of hearing things
From uptight, short-sighted, narrow-minded hypocritics

John Lennon sang nearly 50 years ago. Maybe Heraclitus of Ephesus, the Ancient Greek, pre-Socratic Ionian philosopher, got it wrong when he found: “Panta rhei” – everything flows and everything changes?

It’s 40 years ago this month that I met my soul mate in the Calle Rúa Mayor in Salamanca. Yesterday, 35 years ago, we got married. One day, we’ll go back there. Some people will always have Paris. We’ll always have Salamanca.

Flotus

Sounds like ‘something that floats’. Doesn’t it? And the word came to my mind when I thought of the boat we’re on tonight.

But it means something entirely different. As I learned yesterday, when she was diagnosed with the China Virus, together with her husband.

Anyways… in a land far, far away and

more than 40 years ago someone introduced to and played the classic “On the road again” for me (without the harmonica and guitar solos:), somewhere in Franco’s Spain. He was the real deal: flowers in his hair and a VW Minibus to move around. The type of person who would have sang “Alice’s Restaurant” had he not been German but American. And if we’d have had more time.

I was impressed anyways. It was my first trip abroad on my own and I had met hippies only in The Drifters by James A. Michener.

Even though he used just two chords and just did the chorus it was super cool.

Tonight we’re on the boat again.

Four months later. A few t-shirts and a pair of shorts did the trick. Like that summer in Spain. And like during that summer in Spain, all turned out well, even though it wasn’t always easy. And as at the end of that trip down South that year, after all these months I am happy that it is over.

Last week, in Pforzheim, Pádraig was back in the Lokomat. And he really liked it.

 

We practised and tried out different ‘settings’ for him, to support his thorax from the front, protect his back with a towel, his legs with a layer of neoprene, and keeping his head up with a strap.

By the end of the week, I felt comfortable that, with some help, I could get Pádraig in and out of the Lokomat in a reasonable time and allowing him to have the exercise he so urgently needs.

We had a few sessions walking with Pádraig the width and length of the therapy room in a much more hands-on way as well, without the help of any sophisticated equipment. And there was a smile on Pádraig’s face – so different from the pain he felt just a few months ago when we were in Pforzheim thinking his hip and leg could get fixed with therapy.

During our week in Pforzheim we talked to some families about Pádraig’s procedure. Guess what. Almost all of the families we talked to, three of them, had a member who had undergone a similar procedure. Some more than 10 years ago. Not necessarily all involving hips but all involving a similar procedure. How is it that if this type of procedure is so common, at least in Germany, as it seems to be that we had never heard of it although we asked every specialist, doctor, therapist and people in the know? The world is full of mysteries.

Apart from hard work, we also had some fun. COVID limited fun, slightly out of season. It looked exactly like a Christmas market, down in Pforzheim city centre. Even the weather had adapted. What was missing was the crowds.

The summer is definitely over. Bring along Christmas.

Really?

Ach so

When I hear gallop, I think horse – was what Angela Merkel could have answered.

But: “I see”, is what she said, in a much better, short and dry and poignant way, when a reporter asked her what she thought about the assertion of the former US ambassador to Germany, Grenell, that President Trump had charmed (verzaubert) her.

Yesterday, Pádraig was discharged from Burgau. He left in his wheelchair as he did two years ago when he was here last. Words are not enough to describe our gratitude to the people running the Therapy Centre and the people working there. They had admitted Pádraig with open arms and allowed us to look after him while he was there – all under quite difficult and unique circumstances.

Before Pádraig had the operation in Munich, they had taken the time, at very short notice, to discuss with us the different options for treatment and advised us what they thought was the best choice. Based on decades of experience. When they reached the same conclusions as they had in Pforzheim we knew what way to go to help Pádraig.

The time Pádraig spent in Burgau after his operation was exactly what he needed to support his recovery. The way Pádraig (and us) were treated in Burgau was exemplary.  The outcome was the best outcome we could have hoped for.

In Burgau, as in Pforzheim (where they also had recommended to see the neuro-orthopaedic surgeon Dr. Poschmann in Munich), Pádraig was treated like you and I. He urgently needed help and they (as in Pforzheim) did their very best to assess him, to consider the available options and then helped to organise what was, in their and our and Pádraig’s opinion, the best available option. With all the dignity and respect, with all the patient-centred care you and I had deserved as a human being – and Pádraig deserved, in their eyes, equally, without any doubt or hesitation. The type of medical care that so many talk and write about but too few practice.

Today, we’re back from where we started, in Pforzheim, where yesterday we enjoyed a great welcome breakfast in great company. Having recovered and put back on the road in Burgau by some of Germany’s best doctors and therapists in the field, Pádraig will be back on his feet for a week here in Pforzheim, before heading to the Rotterdam ferry next Saturday.

Ach so. Pure brilliance. And so super cool. Not an attribute you’d usually associate with the German chancellor. (The tweet incorrectly quotes Grenell saying “entzaubert” instead of “verzaubert” which is what the journalist asked in the press conference.)

Last Thursday, with huge credit to be given to the HSE team trying very hard to promote the 2015 Decision Making (Capacity) Act, an explainer video featuring many ‘ordinary’ people who are going to be affected by the act, including Pádraig, was launched following many months of hard work. It was a great occasion joined online by more than 700 people. It turned out, a bit to my surprise, that it was aimed at healthcare professionals and not at the general public. And then, there was a bit of politics and an appeal to press politicians to finally, finally commence the act which will, finally, finally bring Ireland more in line with the UN’s Convention on the Rights of People with Disabilities, CRPD.

Ach so. I see.

The 2015 Assisted Decision Making (Capacity) act, we heard during the HSE online launch of the video promoting the act, will be commenced, if all goes according to plan (!), in 2022 – seven years after it was passed by the Dáil, the Irish Parliament. Seven years. Mein Gott.

 

(Pádraig’s, Pat’s and my contribution is right at the end of Thursday’s launch video recording. When I checked, it looked like there was a problem with the video recording – we could be heard but not seen – but maybe that was just my connectivity.)

For me, the most important part of our contribution, was the assertion that “Not only horses gallop. And not only those with a clear voice and their eyes wide open can hear, understand, read, reason, and decide.

Ach so?


Here is an outline of what we said.

When I hear gallop I think horse, a doctor once told us.

When someone sees Padraig, with his eyes half closed, with little movement, and no voice, they often think he can’t hear, listen, read, understand, reason, or decide.

Assumptions help us to understand the world around us. But they can also limit, and sometimes dangerously limit, our capacity to look a bit closer, to see the Zebra galloping down the savannah in Dublin Zoo or to allow Padraig an opportunity to live his life, to offer him inclusion, equality, participation, and self-determination.

Here are two examples Pádraig encountered of such limitations.

One of the first questions we were asked by staff in the neuro ward of Beaumont Hospital following his accident was: “Which nursing home is he going to go to?” Nobody even considered asking Padraig about his preference, or indeed whether he wanted to spend his life in a nursing home. As it happens, he didn’t.

Another example of such limitations Pádraig came across was at the last elections, when a neighbour kindly offered to stay in the house with him while we, Pat and Reinhard, went out to vote, assuming that he didn’t vote. Another neighbour the three of us met at the entrance to the polling station offered to stay outside with him while we went in to vote. Padraig’s interest in politics has not diminished since his accident seven years ago and he stays well on top of current affairs. He is always very informed when it comes to elections or referenda. And he always votes.

One of the key words in the new act is assisted decision making. We have learned that this ‘assistance’ must come from somebody who knows the person well and understands them, especially for those in a similar situation to Padraig’s. Otherwise, big misunderstandings will happen. Here is one example.

When a therapist asked him before the last elections if he liked Donald Trump, using his manual communication device he answered with one bleep, meaning ‘yes’, surprising the therapist. The family knew Pádraig liked listening to Trump as he found him entertaining. So we asked him whether that was true, and he answered ‘yes’. When we then asked him if he liked Trump’s politics, he emphatically answered “no”, bleeping twice.

But assistance must come not only from someone who understands the person and is close to them, it must come above all from a person who has their best interests at heart. Health professionals, courts or court appointed officials might not always be the most suitable for this role.

Over time, we have learnt that Padraig can read, understand and solve complex problems. He can read questions and, using a switch, the ‘bleeper’, pick the correct answer. His sense of humour and language preferences have not changed. If you asked him to spell his name and you expect ‘P’ followed by an ‘a’ you will learn that he prefers an ‘á’. He still likes his mother to speak to him in English, his father in German and his friends as Gaeilge.

We have learnt that the only barrier for him to express himself and fully participate in conversations is our incapacity to provide him with the adequate means. That is why we are constantly on the lookout for new technologies, like the ‘handshoemouse’ that we found during the summer, or leading-edge research ‘translating’ cortical activity into text, in other words: translating your thoughts into speech.

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Central to the most fundamental human rights is the right to self-determination and the right to be included in society’s decision making processes. It is encouraging to see that these rights are gradually becoming the norm in Irish society and that they are being supported by the new act.

It will be up to each and everybody among us to question and change existing perceptions, preconceived expectations, mindsets and embedded attitudes in relation to a person’s capacity. Even the genuinely well-meaning will need to make a big effort in order to see beyond the obvious, as we have seen in the examples above.

For us as family members, the act marks a radical step in the right direction. We look forward to Padraig’s participation and inclusion in his affairs, soon to be legally recognised in Ireland. We look forward to not having to fear that outside bodies or persons may take decisions against Padraig’s wishes, decisions which may not be in his best interest. It is a source of joy and relief to us that his decisions will finally be respected legally as well.

Not only horses gallop. And not only those with a clear voice and their eyes wide open can hear, understand, read, reason, and decide.

No decision about Pádraig without Pádraig.

“No decision about me without me” (Pádraig using his computer-generated voice.)