Historic

What a week. Both, the one that just past and the one lying ahead.

I took dozens of pictures and as many videos of the arrival of nearly half a dozen of crates and as many men to take them off the truck and onto An Saol’s premises. The 500kg crates were nearly impossible to get off the truck, they had to be taken apart outside and then the parts moved one by one into the building, some of them around the building first, so we could get them through the doors. Not good if you have a weak stomach or a bad heart. Then nearly two days of assembling, three days of training and a mini Open Day for just over an hour to show a very small number of selected guests around the building and demonstrate the mind-blowing equipment. There were families there, some clients, representatives from different organisations, including the HSE, Headway Ireland, Roisín Shortall, our brilliant buildings project manager, staff etc.

What happened last week was the result of years of very hard work. It was a first in Ireland. It will, for the first time, allow us to offer dedicated Community Rehabilitation, supported by state-of-the-art robotic-aided gait training equipment. It was historic.

But it is this picture of Sara Walsh’s father that I like best.

We met Sara and her parents first in Beaumont. We learned from them what to look out for when you spend long periods in an acute hospital. Very sadly, Sara died later. When I was wondering whether to go ahead with An Saol or not, it was the very generous and completely unexpected donation from her family that took that decision away from me and made it clear that it had to go ahead.


So we decided to dedicate the Gait Training Area of An Saol’s Rehab Centre to the memory of Sara. Or better: to her presence. Because she is with us and will always be.

The biggest regret is that Pádraig could not be there with us. He is the driving force and inspiration behind An Saol. Not only did he come up with the name and the logo (initially for his Irish language podcast), but with the concept and the implementation. Every day, he is convincing medics, politicians, other families and society that there is ‘life and living with a severe acquired brain injury’.

A heart-felt “thank you” to everybody who contributed to this incredible achievement. Family, friends, supporters. This was a dedicated team effort that went on for years. No one on their own could have made this happen.

Later today, we’ll be driving back towards Pforzheim. We’ll get there tomorrow after a half-way overnight stop. Tuesday will be Pádraig’s first appointment with a consultant to assess his hip. Monday week, he’ll have another one and then we’ll know more. Both appointments are in different cities. It’ll be a busy 10 days or so ahead of us. But sure….

Idealistic

Greenpeace had built an arch that looked like a rainbow on the dike, just before the mile-long bridge to the Arche Noah begins: “Life After Corona”. They offered coloured sheets on which people could write their thoughts and stick them onto the rainbow.

We were on the way to the Arche and just made it, before it started lashing. We could sit outside, with a roof over our heads, and sat out the rain. In the meantime, we had Currywurst, Schnitzel and a Burger. Pádraig wanted a Coke, we had a glass of dry white wine. At least that’s what we ordered. What we got was white alright, but ‘lieblich’ more than ‘trocken’.

Why is any of this worth mentioning? – Because it is so completely normal, ‘stinknormal’. To go for a walk. To see other people and observe what they’re doing. To get wet from the rain. To run for shelter. To give out about the service. To be alife.

I have no idea whether there will be life as we know it after Corona, never mind what it will look like.

I find it hard to connect with people who worry about their mental health because they feel isolated these days. People who are bored out of their mind because they have to watch movies all the time, or read books, or go for long walks, or be with their family. People who cannot go to the cinema, to the pub, to the gym, to the hairdresser. What is their life like if they feel that this is hardship?

One of my older sisters, the younger of the two, died last week 20 years ago. I smoked a cigar for the first time in years because I wanted to take some time out and remember her. The cigar made me think of my father who had swapped cigarettes for cigars during the war because there was less demand for them and they were easier to come by. He always had one in one hand and puffed. My mother worried about her curtains going all yellow. Even the newspaper cuts my father sent me, no matter where I was, so that I kept abreast of what was happening in Dortmund, smelt of cigar smoke.

A lot, if not most, of the people who attended my sisters funeral are long dead. The paper my father sent me important cuts from, does no longer exist.

I listened to Carlos Puebla while I was smoking

Carlos says in the introduction that the first verse reflects what ‘our commander in chief’ said when he read Che’s letter of resignation.

The whole thing, the picture, the myth, the glorification, all that is a bit pathetic. Sure.

But the idea is all but, the idealism, the knowing what is right and wrong and to do something about it, the fight for justice, is all but.

After my previous life kinda ended, someone from that life told me that colleagues saw me as an idealist. As if they were bad mouthing me.

What’s wrong with being idealistic? – Would the Che have joined Greenpeace?

Seven

His friends left the room, packed with high-tech life support machines, when I arrived. He didn’t move and had a big white bandage around his head. Someone had written on it, with a thick black marker, “No Bone”.

Any chance of a misunderstanding I had hoped for so desperately disappeared in an instant. My body went into shock and I cried like never before.

That day sent all of us, especially Pádraig, on an incredible journey. What he has been experiencing is beyond imagination. With a huge impact not just on him, but also on everybody around him.

The world did not stop that day. But it started to change. it will take some time for us to fully realise the extend of the impact of that accident, for which nobody was ever prosecuted. What is certain, though, is that it was much much bigger than anybody could have anticipated that day.

That day, Pádraig started to open doors.

Pádraig opening the underground garage door in Pforzheim.

It‘s seven years today that the phone rang just before I was going to bed in Sanya on Hainan Island in the South China Sea.

Together with a good friend, I had just won a fun quiz pool side competition, following a long day of a localisation conference to which a Chinese company had invited me. I had used ‘Skyfall’ as a metaphor to present my view about how I saw the field changing dramatically. Skyfall.

It took another few phone calls that night for us to start to react to what had happened earlier that day on Cape Cod.

I didn’t go to sleep that night, booked flights and a car for Boston Airport, and left the hotel to head for the airport at 5am.

The rest of the family made their arrangements on the other side of the world. We arrived in Hyannis within hours of each other.


The following seven years have felt like several life times.

What happened that day nearly killed Pádraig many times, including occasions where one of his friends and then us were asked to consent to his death, to “allowing” him to die.

That decisions though is nobody’s but his. No decision about Pádraig without Pádraig. Especially if it is a life and death one.

We will leave Pforzheim this morning to drive up North. We‘ll be back in two week‘s time to see two (neuro) orthopedic specialists. Pádraig’s hip issue, we have learned here, cannot be resolved with therapy alone.

His journey, Life and Living, continues. Like yours. Like ours. In company. With Love.

Pickle

Have you ever been in a pickle? – Do you know what “I’m in a pickle” means? I had to look it up when I heard it for the first time in an ad some weeks ago. I had to think about that expression this week for several reasons. Christopher McCandless story was in the news – making me think about our trip to Alaska. Making me think: they can take away the bus but they can’t take away our freedom. We were trying very hard to find an answer to Pádraig’s hip issue. And we were looking at ‘logistics’: our plans are changing around new doctors’ appointments.

Christopher McCandless was in a pickle when he ran out of food and couldn’t return from ‘Into the Wild’ in 1992. He lived in a Fairbanks Bus 142 for about four months in Alaska and sadly died there at just 24 years of age. Jon Krakauer wrote a book in 1996 and Sean Penn made a movie in 2007 about his life. Both are one of Pádraig’s favourites (and mine). Alexander Supertramp, his pseudonym, wrote a diary that inspired many, including Pádraig and one of his friends, to leave ‘stuff’ behind and concentrate on the essentials. Pádraig still has to go on that trip into the wild, to Alaska.

We’re working on it.

Last Thursday, Alaska state officials said the bus was removed by a heavy-lift Chinook Helicopter as part of a training mission “at no cost to the public or additional cost to the State”. (That must have brought a big sigh of relief to many.)

It was decided that the bus had become some kind of threat to public safety. Too many people, presumably unfamiliar with the territory, had ventured out to the bus and got not just ‘into the wild’ but also ‘into a pickle’. At least one other person died there.

I assume that the Alaska state authorities believe that people are now safer. I find it difficult to follow that argument. And really, removing that bus doesn’t make much of a difference.

If people want to get out and do it, they will just get out and do it. And they will be very very glad that they did. Nobody will be able to lock them up in their ‘safe’ civilised  regulated and standardised lives by removing a bus.

Talking about buses.

A friend of Pádraig’s recently bought a bus for herself. It’s even wheelchair accessible. Pádraig hasn’t asked her yet. But, maybe, one day he will. And, maybe, just maybe, she might give him a loan of it for a while.


We went for a walk on Friday, up a very steep narrow road, to Pforzheim’s main cemetery. I’ve often thought that how people burry their dead says a lot about them. German cemeteries are like parks. Really well maintained parks. And the graves are like really well-maintained little gardens.

When I went with my mother to visit my father’s grave many years ago, she regularly said to me that she was afraid to die because of my, in her eyes, very little satisfactory approach to grave maintenance. She would really feel very uneasy thinking that I would’t look after her grave properly, as if it was a well-manicured very small version of a French garden. I am sure it wasn’t just that but the thought of one day being buried in an untidy grave really felt unsettling for her.

Here in Pforzheim part of the cemetery is a memorial for the more than 13,000 people who were killed in just one night, on 23 February 1945, when the city was fire-bombed for just a 22 minutes by the British Air Force for apparently no reason. – We discovered the monument some years ago and it’s a quiet, somber place perfect to reflect on life and how we cherish it – or don’t.

There is also a memorial to those who were killed by the nazis because they happened to have a disability. The memorial lists their names and ages, some of them as young as eight years old.

I took a video and when I looked at it again, I realised that you can just about see Pádraig’s reflection in it.

The memorial is incredibly moving in its simplicity: To remember and to commit (“Zum Gedenken und zur Verpflichtung”) and then quoting article 2 of Germany’s Constitution (basic law or “Grundgesetz”): “… everyone has the right to life and physical integrity” (… jeder hat das Recht auf Leben und körperliche Unversehrtheit).

I came across and added a screen capture of a tweet from last week showing how the President of the United States is campaigning for his re-election using a symbol the nazis used to identify political prisoners in concentration camps.


During the week, there was a bit of a commotion in the centre. Someone had left a big big fruit basket for Pádraig with a really nice card.

Turned out that a family, friends of ours, had heard that Pádraig was in their neighbourhood and had sent him this really thoughtful and beautiful and nice tasting present. It lit up his (and our) whole week!

We also got a visit from my sister and husband which was really nice. We managed to go out and have a pizza in a lovely beer garden / open air pizza cocktail bar. All socially distanced and our names logged in with the restaurant, just in case… Being out, seeing other people in normal circumstances felt like a whole new experience.


I put together a few pictures and videos of Pádraig to show how much in control he his of his body, how he can, being asked to do so, move his arms and legs – even the right leg which is compromised by his bad hip.

Moving his right arm.

Moving his left leg.

Moving his right leg.

We also rediscovered a way to help him holding his head in the lokomat which he is now using for the full scheduled 45 minutes every day.

After many conversations and advice from different people, including several good friends and specialists in Dublin, we made two appointments with specialist surgeons here in the South of Germany to assess and possibly address Pádraig’s hip problem. We discovered that there is a field called ‘neuro-orthopaedics’ where surgeons have experience not only with orthopaedics but also underlying or connected neurological issues. If Pádraig needed a surgical intervention, even his anaesthetic would be complicated. There are not many patients like Pádraig and few surgeons would have the necessary experience to treat him. We want to feel comfortable that the doctors and their team have the necessary experience and knowledge.

It means our plans will have to change and that we will have to figure out a few details. But we’re well used to that.


What happened to Pádraig’s hip is not unusual and is, to our surprise, a pretty well-known development in cases like Pádraig – of which, it has to be acknowledged,  there aren’t that many.  I do not remember that anyone responsible we asked over the past year and a half or so explained to us what was going on. Never mind initiated an appropriate treatment plan for him. E-mails and enquiries remained unanswered, referrals did not materialise, solutions offered remained at the level of a 45 minutes demo session of stretches for Pádraig aimed at carers.

I might be completely wrong but I think many do not see Pádraig walking again ever. Even if walking is the best therapy to prevent many of the secondary injuries or illnesses – such as that with his hip.

A bit like the approach to his catheter, his tracheostomy, his PEG, his eating and drinking, travelling and reading.

Nothing with Pádraig without Pádraig. He wants to be here. He wants to take on any problems and try to address them. Today, when we asked him what he was thinking – was he thinking about his hip, did he feel any pain – it turned out that he was listening to a song on the radio about hope.

It seems that the rehabilitation of those with a severe Acquired Brain Injury has to be driven by their family who share their hope.

Hope that is not desperation. Hope that you need when you are in a pickle. Hope that gives me the strength to keep going. Hope that gets us out and do it. And I am sure that we will be very very happy that we did.

Click

There is a gorgeous view of the Black Forest, the “Schwarzwald”, from the balcony of the therapy centre in Pforzheim. Sitting here on a good day can make you forget your troubles.
When you talk to people here, many will tell you that what they most like about the place is that people are motivated and engaged and ambitious.

They have not given up on themselves and they don’t feel that others have given up on them.

Some have brain injuries, more have spinal injuries. All of their lives have changed forever since their illness or accident. But they all believe that if they keep trying their life will become better.

Sounds pretty ordinary, doesn’t it? Everybody’s life changes all the time. Plans don’t (always) work out, (some) dreams seem to disappear in thin air and God is laughing his head off watching us humans wondering where it all went wrong.

But most humans would agree that things, life, will get better if they keep trying. Practice living. It helps.

Only that the challenges people here are facing are a bit tougher than average.

Everybody here has heard doctors, nurses and therapists telling them that they should ‘face the facts’ and accept their life ‘as is’. Some have been told their lives are basically over. I know at least one person who has been told he’d be better off dead.

That would be true if life wasn’t worth trying.

People here are 100% convinced that life is worth trying. They have not given up. And it shouldn’t come as a surprise that because they are trying, very hard, they are making progress in their recovery. Most importantly, they live their lives. They have disappointments and they have successes. They are sad, at times, and they are happy, at times. They are bored and they’re having fun.


We’re still trying to figure out how best to approach the problem with Pádraig’s hip. Good friends are helping and we hope to get a better picture over the coming week.

In the meantime, one of the therapists here gave us a loan of a ‘handshoe’ mouse for the weekend for Pádraig to try it out. It’s a mouse that fits his hand like a glove. While Pádraig finds it difficult to move his hand with the mouse, it was no bother for him to click the right mouse button with his index and the left mouse button with his middle finger of his left hand. Once, twice, or many times. Very controlled. – Here is a very short demo of how he does it.

 

Isn’t it absolutely amazing?

We knew he could control the movements of his fingers, especially of his left hand. But it was the ‘handshoe’ mouse that provided the support for his hand. We’ll have to figure out how. But I know that being able to use two buttons will allow Pádraig to control a computer, to drive a wheelchair, and to do many more wonderful things.


Yesterday, Pádraig’s Kia did not start and I got a jump start from a fellow patient in a wheelchair who got down to his car, drove up to the Kia, opened up the flap under the passenger seat to access his car’s battery and helped me to get the Kia started.

In between he told me that he didn’t even think about the truck driver anymore who had knocked him off his bicycle and abandoned him on the roadside for dead. He was focusing on enjoying his life as much as possible.

When he left he said that he was really happy for having been able to help me.

What an example to follow.

He didn’t get there on his own. He had people around him he could trust. People who believed 100% that his life, like their own, was worth living. People who kept trying. Like himself.

Pádriag is living his life. He has never given up. His believe in life inspires me and his trust humbles me.

It’s hard to know these days who you can trust. Definitely not the banks, probably not the builders, there are serious doubts around the politicians, the church, the police and the justice system. ‘Trust me, I’m a doctor” is a good song but questionable as a statement.

By contrast, I’d fully trust the man in the wheelchair who helped me start Pádraig’s car. I trust Pádriag with my life. Is it because they haven’t promised me anything? Because they keep trying in the face of terrible adversary?

“Someone press the reset button on the world”, I read yesterday. Would that be an option? – Giving up most definitely isn’t.

Pádraig could click that reset button. With his index or his middle finger.

Proud

One of my favourite scenes from the brilliant movie “The Commitments” from 1991 is when “brother” Jimmy Rabbitte explains the essence of the music he wants to play to the new band members, using a James Brown song from 1968 as an illustration.

When one of them expresses his doubts saying “maybe we’re a little white for that kind of thing?”, brother Jimmy explains:

“The Irish are the blacks of Europe. And Dubliners are the blacks of Ireland. And the Northside Dubliners are the blacks of Dublin. So say it once and say it loud, I’m black and I’m proud.”

On Sunday morning, we jump-started Pádraig’s Kia car and made our way to the first ferry. At lunch time, and after a good rest, the car started well (!) getting us off the ferry and across England to a second ferry to Holland, from where it was just seven hours to Pforzheim.

We thought a lot about the decision to make this journey. Then, when we had taken it, things happened quickly. We gave notice of our emergency plans and requested letters to explain why this journey had become necessary, just in case. We planned the safest way to make this journey, eliminating as much as possible contact with other people. And we planned in as much detail as possible what we were going to do once we got here.

Eventually, all worked out really well and we arrived in one piece, though completely exhausted, almost 36 hour later, at our destination.

On our roadtrip through Coronaland, we discovered that anywhere you go you have to wear a mask. No discussion, no exceptions. If you haven’t got one, they sell you one. We discovered that a litre of Diesel now costs less than a euro, even beside the motorway which is usually much more expensive. There are plenty of really well kept spaces where you can check and clean your car. All part of good customer service, surprisingly well kept when you’re coming from Ireland.

Therapies here start at eight, we have to get up early. There is not a minute wasted.

Last year, we had gone to the SLT clinic in Lindlar and had skipped our regular sessions in Pforzheim. To meet our friends again after now two years was really nice.

Sadly, there is no other word than ‘shock’ to describe the reaction of Pádraig’s therapists here when they saw the state of Pádraig’s hip and knee. They had been used for Pádraig to make progress each time they saw and treated him, they expected him to participate better each time he comes here. While they were truly impressed by his increased body control and startling cognitive abilities, the condition of his right hip shocked them.

They said that if his hip had been in a good condition, his general physical and mental state was so good that they’d be using a walking frame to walk with him now. But plans had to be adapted. We booked an MRI for Monday and discussed several possible scenarios. Therapists and a doctor who checked his hip agreed that it was most likely dislocated.

A dislocated hip can lead to serious long-term debilitating problems, especially if it is severe or not adequately treated within hours of occurrence“, is what a US-based specialist hospital website says about hip dislocation.

For months, Pádraig had had great difficulties stretching out his right leg because of his hip problem, a problem I had pointed out to as many people as I could. He was not able to lay down and stretch out that leg. When sitting, his right knee was very clearly ‘off level’ with his left knee.

… which, it seems, should not have come as a surprise:

“When the pelvis is out of alignment, the load of our body weight is distributed into the legs unequally. As a result, any one of the joints in the legs, particularly the knees, can be adversely affected over time. Additionally, there is an increased risk of an acute injury because of the resultant instability.”, says another website.

Here is a bit of an impression of what Pádraig has been doing during the week.

 

We went to Pforzheim because I was very worried. Pádraig urgently needed specialist care for his hip problem.

Pádraig’s life matters.

That’s why we went.

Say it loud. I am proud.

We won’t quit movin’ until we get what we deserve
We’ve been buked and we’ve been scourned

We demand a chance to do things for ourselves
We’re tired of beatin’ our head against the wall

We’re people, we’re like the birds and the bees
We rather die on our feet than keep livin’ on our knees

You know we can do the boogaloo.

DreamFerry

We‘re on the Ferry and it‘s just leaving Hull on a long night journey to Rotterdam.

Leaving Anglesey crossing the famous WWII – look alike bridge

The day started early, getting the ferry from Dublin to Holyhead, then crossing Wales and England to Hull.

When we‘ll arrive tomorrow morning, we‘ll drive 6-7 hours to Pforzheim where Patrick will be getting badly needed specialist treatment for his hip.

Last Friday, Pádraig had, of course, the big 3 0, with some socially distanced friends calling in to wish him well, joined by dozens who had sent cards, messages, and joined a big Zoom call. One of his friends even had assembled a huge number of personal video messages which he edited into a 20 minutes plus mini-movie, with friends calling from their homes, their canoe, and even from their retreat in Nepal!

I‘m typing this from my phone, trying to finish up before we‘ll loose the internet.

Ahoi!

Nostalgia

The most difficult items to part from are those with an emotional attachment and loaded with memories.

It’s completely illogical: I know that I will never read this book again, but because I bought it when we were looking for post-civil war books in antique bookshops all over Spain, including in the famous Cuesta de Moyano in Madrid, in Barcelona, Seville and many other places, because it reminds me of the good, carefree times, giving it away feels almost like giving up on those memories. I remember this book, because I walked for hours through dusty streets to find the shop in the sweltering heat of Barcelona.

I hadn’t seen that book in years, I was not missing it, but when I took it out of the shelf, this now ancient piece of paper fell out, with a six-digit telephone number and address, instructions on how, where, when and from whom to collect it.

These days, there are hardly any people left with landlines. You search, even for old, books on the internet from your sitting room. No sweat. No dust. No bell ringing when you enter the shop. No chat with the owner who must have been wondering what a German wanted this book for. Sometimes I think that there are hardly any people left reading books

Do you have to be old to experience nostalgia?


We downloaded a quizz app. One of those that asks you a questions and gives you three possible answers. It was free. The questions weren’t too bad, but…

… the print was pretty small. So small that we had to get the reading glasses out. We were about to read out the first question to Pádraig when he bleeped the answer. Turns out that Pádraig’s eyesight is pretty sharp. Or – ours is pretty bad.

Another surprise came yesterday morning, when I went into Padraig’s room and found him with his left foot stuck out of the bed and doing an exercise we are usually doing together or, more precisely, I do for/with him: I hold his lower leg with my right hand and rotate the foot with my left.

Turns out, he can do that much better without me. The above is just a very short version of what he did for a considerable amount of time. This is not just about him being able to move his foot, it’s also about him having the motivation to do the exercise, to do the planning of it, getting the foot/leg in the right position and probably another dozen of things.


Next Friday’s birthday is getting closer. Pádraig will be 30. Seven years ago, we celebrated this day in a nice restaurant and, after the meal, said good-bye to each other in Parnell Square. He was going to go on his last J1, having finished his degree, to Boston. He wanted to take some time out to think about his many options in life.

“Trau keinem über 30” was a very wide-spread saying during the student ‘revolt’ of the 70s in Germany. “Don’t trust anybody over 30”. You know yourself: you get married, have kids, maybe buy a house, settle down, become part of the bourgeoisie, watch the TV all night, lead a boring, uneventful live, you adjust, accommodate, compromise, fit in.

I got him a t-shirt, a picture, and a comic book: Trau keinem über 30. I thought it would be good humoured because Pádraig is anything but someone with these ‘normal’ characteristics, and has never been. My brilliant idea hasn’t been received as I would have hoped so far by the family….

An idea that definitely has caught the imagination of his friends is Raphael King’s “85k walk in 29 days“. Raphael shares Pádraig’s birthday on the 29th, so she has decided to walk 2.9k everyday during this month to raise funds for “Caring for Pádraig”, supporting his ongoing rehabilitation needs. Thank you, Raphael! You are an inspiration.


Earlier in the week, I wrote a Letter to the Editor of the Irish Times. Once I had sent it, I felt it would not be published. Not least because it commented on an ongoing case. That case has now been decided by the President of the High Court. So here is my letter.

Subject: Letters to the Editor – Interim Death?
Date: 17 May 2020 at 15:18:12 IST
To: lettersed@irishtimes.com

Sir, — There is no ‘interim’ death. The ‘interim’ order by Mr Justice Mark Heslin of the High Court permitting a hospital not to resuscitate a brain-injured woman, “in her best interest”, as reported by Mary Carolan (“Court order permits hospital not to resuscitate brain-injured woman”, News-High Court, May 15th) is based on the wardship system governed by a Lunacy Act that is 150 years old. It has long been replaced by the Assisted Decision-Making (Capacity) Act 2015 – which has, however, still not been commenced.

According to the National Safeguarding Committee, the principles established in the United Nation’s Convention on the Rights of Persons with Disabilities are given no recognition in the current wardship system. The Committee states, “that the current system does not meet basic human rights standards for those in the wardship system” (https://www.sageadvocacy.ie/media/1153/review-of-current-practice-in-the-use-of-wardship_dec-2017.pdf). The recent High Court order was given against the expressed wishes of the family (who were not present or represented in Court) and without independent medical expert advice.

Some doctors continue to suggest to families affected by a severe brain injury that their loved-ones have no meaningful life to live. We know better. We see every day that a meaningful Life and Living with a severe Acquired Brain Injury is possible with adequate support.

Reinhard Schaler


Below is an update on the interim order made by a High Court judge last week. Unless I am missing something, what the article says is that: the interim order is now confirmed, though the woman has not yet been made a ward of court; her capacity to make decisions has still not been assessed by an independent expert (the family believes that she knows and understands what is going on, the doctors disagree); the family, having talked to doctors and the guardian, now agree to an “alternative treatment plan” by the hospital which is, essentially, palliative, meaning they will allow the woman to die should she require further treatment; in the meantime, the family would like to take her home, but they have not been allowed to do so. All that based on the fact that the woman has a severe brain injury and a “litany” of conditions I am all too familiar with.

Honestly? My heart is bleeding and I fail to understand what is going on.

What do you think?.

Here are the details reported last Wednesday, 20 May, by Ann O’Loughlin in the Irish Examiner:

The president of the High Court has continued orders allowing a hospital not to resuscitate or ventilate a brain injured woman, aged in her late 50s, with “a litany of conditions” and a “very poor” prognosis.

The woman’s family, who had previously wished ventilation/CPR to be pursued, consented to the orders.

Two clinicians involved in the woman’s care, in the woman’s “best interest”,

…supported an alternative treatment plan, described as “likely to be end of life care”, comprising ward-based management, conventional oxygen therapy and intravenous treatment.

The report goes on to say:

Mr Justice Peter Kelly was told today the family, following discussions with the woman’s court-appointed guardian and others, were consenting to the orders continuing and to the hospital treatment plan.

He was told by David Leahy BL, for the HSE, the woman is currently stable but “barely conscious” and will continue to require permanent oxygen support.

She has severe neurological damage as a result of an acquired brain injury, extensive care needs and very compromised levels of capacity. She suffers from a range of conditions, is tube fed, non ambulant, sleeps some 22 hours daily and is doubly incontinent.

(…)

Mr Justice Kelly expressed sympathy for the “very sad” situation the siblings found themselves in and said he did not underestimate the very hard decisions they faced.

The earlier disagreement with the doctors as to how their sister should be treated was “perfectly understandable” and other families who had come before the court had found themselves in a similar position.

He continued the orders and returned the wardship inquiry to next month.

He indicated he saw no reason why the siblings, in line with their wishes, could not be appointed as the committee to represent the woman’s interests if she is taken into wardship. The guardian supports the wardship application, the court heard.

The judge agreed a capacity assessment of the woman by an independent medical visitor could take place, as her sister requested, in the presence of the sister.

While doctors are of the view the woman is of unsound mind and lacks capacity, the family consider she understands what is going on around her better than the doctors think, he was told.

On being told the sister wishes to care for the woman at home after discharge from hospital, rather than have the woman returned to the residential care unit where she has been for many years, he said the home option could be considered by the woman’s treatment team.

Interim

Tags

Is there an “interim” death? – I’ll come back to that later.

We had one of the best family days in a long time yesterday, finishing it up with a double-dose of the Eurovision Song Contest. A review of the best moments (we couldn’t decide which of the songs sang by Johnny Logan was better – they are both fabulous) and then the 2020 Non-Competition – where, as the Irish commentator – who after weeks of cocooning clearly had no ambition or sense of competition left – put it, at least we couldn’t loose.

We watched Conchita Wurst again, singing “Rise like a Phoenix” from the 2014 Eurovision –

And rise like a phoenix
Out of the ashes…

… and one of my all time favourite, Nel blu dipinto di blu from 1958 by Domenico Modugno, who didn’t win, but made the song an international hit as Volare, which connected the blue skies, the passion, and the beauty of Italy to the grey, downtrotten, post-war era of my childhood – dreaming of the South and the Mediterranean:

y me improvisó el viento, rápido me llevó
y me hizo a volar en el cielo infinito.

 

The highlight of this year was undoubtedly Love Shine A Light performed by the artists of Eurovision 2020 – Eurovision: Europe Shine A Light. Personally, I liked the Icelandic singer best.

Pádraig had a spectacular brunch with us out in the garden with fried bread, eggs and sausages. After a short nap, he had one of his now regular, very lively Zoom-calls with his friends.

He continues doing quizzes and enjoys them tremendously. Reading the questions himself and then picking one of usually three proposed answers. The questions cover history, geography, his own memories, and other fields. Some are quite complex maths questions with additions, subtractions, multiplications and divisions all in one calculation, with answers in the hundreds at times; so he bleeps the ‘hundreds’, followed by the ‘tens’, followed by the ‘singles’. It’s uplifting to see the kick he is getting out of this. And wonderful to see that he is doing better than I probably would.

Isn’t it unexplainable, that not one therapist, over almost seven years, has ever tried this – apart from one, nearly 5 years ago, for a few weeks? That no therapist has ever thought about exploring Pádraig’s mind, motivating his recovery, allowing his participation, encouraging his rehabilitation, using this tool?

Talking about tools – we are still holding the bleeper under Pádraig’s hand and fingers because we haven’t found an OT with a “workshop” who could build him the necessary arm/hand support.

A few weeks ago I heard a presentation about ‘increased tone’ that explained in detail what is happening to Pádraig’s hip, looking into likely reasons, and listing possible treatments. The presentation was not about Pádraig, it was about what generally happens after a sABI. – If this is ‘general knowledge’ amongst specialists, why is that knowledge not applied?


What is “interim” about death?

Ann O’Loughlin reported in the Irish Examiner and Mary Carolan in the Irish Times that Mr Justice Mark Heslin last Friday issued an interim High Court order that “permits hospital not to resuscitate brain-injured woman” – as it “was not in her best interests and would not alter her prognosis”.

He said, it was in the best interests of the woman to make the interim orders, following the recommendations of her treating clinician, and an intensive care medicine consultant.

The woman is in her 50s.

The hospital’s application was being made in the clinical best interests of the woman and was not based on any consideration of scarce ICU resources, counsel stressed.

David Leahy BL, representing the hospital, said that the family had argued she should be resuscitated if required but there was a more recent indication their position may alter and they had sought more information on the hospital’s proposals.

Mr Leahy was quoted as saying that the woman has severe neurological damage as a result of acquired brain injury, extensive care needs and very compromised capacity. She suffers from a range of conditions, is tube fed, non ambulant, sleeps some 22 hours daily and is doubly incontinent.

The family was not present at the proceedings.

There is not a mention of the Assisted Decision-Making (Capacity) Act 2015, signed into law on the 30th December 2015 (sic!).

This Act applies to everyone and is relevant to all health and social care services.  The Act is about supporting decision-making and maximising a person’s capacity to make decisions. The Act will have significant implications for health and social care providers in the provision of safe person-centred care, based on respecting the individual rights of each person.

      • It abolishes the Wards of Court system (under which last Friday’s decision was taken).
      • It repeals the Lunacy regulations (Lunacy Regulation (Ireland) Act 1871 (sic!) and the Marriage of Lunatics Act 1811 (sic!)) governing this Ward of Court system.

The “National Safeguarding Committee (SAGE), Promoting the Rights of Adults who may be vulnerable”, in their Review of current practice in the use of wardship for adults in Ireland of December 2017 stated unambiguously, referring the the Assisted Decision-Making (Capacity) Act 2015:

There is a concern that while ratification is outstanding, the principles established in the United Nation’s Convention on the Rights of Persons with Disabilities, which recognises the rights of persons with disabilities as fundamental human rights, are given no recognition in the current wardship system.

Our interviews with various stakeholders reveal that the current system does not meet basic human rights standards for those in the wardship system, which underlines the urgency of commencing the Assisted Decision-Making (Capacity) Act 2015 and ratifying the UN Convention on the Rights of Persons with Disabilities.


Summarising in my own words: there seemed to be an urgency to allow the hospital not to administer life-saving treatment to the woman – all based on the advice of a ‘treating clinician’ and an ‘intensive care medicine consultant’, under legislation around 150 years old. The decision was taken “in her best interest”, but against the expressed wishes of the family who was not present nor represented at the court hearing.

Nature, the world’s leading multidisciplinary science journal, reported just over two weeks ago:

After severe brain injury, it can be difficult to determine the state of consciousness of a patient, to determine whether the patient is unresponsive or perhaps minimally conscious, and to predict whether they will recover. These diagnoses and prognoses are crucial, as they determine therapeutic strategies such as pain management, and can underlie end-of-life decisions. Nevertheless, there is an error rate of up to 40% in determining the state of consciousness in patients with brain injuries.

I wonder whether the judge, the ‘treating clinician’ and the ‘intensive care medicine consultant’ were aware of the shockingly high error rate of up to 40% and the 2015 legislation? I wonder what qualified the doctors medically and ethically to act ‘in the best interest’ of the woman, and against the wishes of the family in such a complex case? And I wonder, what triggered the urgency of the ‘interim’ order?

The current system does not meet basic human rights standards for those in the wardship system, yet life and death decisions are still being taken – on an interim  basis, without family involvement and without independent advice.

I wonder what would have happened if Pádraig had been treated by the same doctors and if they had presented his case to the High Court some years ago – in his “best interest” and against our expressed wishes? – Then, Pádraig not only suffered “from a range of conditions, is tube fed, non ambulant, sleeps some 22 hours daily and is doubly incontinent” — he also had a tracheostomy.

Am I missing some important detail?

In the meantime – fly like a Phoenix, me improvisó el viento, rápido me llevóy me hizo a volar en el cielo infinito.

We are all in this together.

There is no interim death. Once you are, you are.

Motet

I had to look up this morning what a Motet is.

Vlad Smishkewych played one of the most magnificent motets on his RTÉ Lyrics FM radio programme this morning, sending with it his best wishes to Pádraig and pointing to the amazing fundraiser Raphael is running (walking:) for Pádraig from the beginning of the month to the 29th, the day both share as their birthday – just 35 years apart. (Listen back to Vlad’s greetings here.)

 

Check out the details of Raphael’s fundraiser on iDonate.

The motet Vlad played this morning, Spem in Alium by Thomas Tallis, is considered, according to the Encyclopaedia Brittanica, “a tour de force of Renaissance polyphony that is unsurpassed in the English repertoire. It probably dates from the late 1560s to the early 1570s.” There are several versions of it on YouTube, one being the version Vlad played this morning by the Tallis Scholars, another the recording of a live concert by Harry Christophers, which has the advantage of showing how the 40 singers, divided into 8 choirs are standing in a semi-circle when singing this unbelievable piece of sacred music.

That music transported us away into a different world, as very few, if any, other could do. I suspect that was it was written for that purpose. And how it achieves its aim. Even when you’re listening to it a few hundred years later and not in a Renaissance Cathedral. What a way to start a Sunday.


Yesterday, Pádraig went to the funeral of his grand aunt who died at the age of 93 – and no, not of COVID-19. The funeral though was all about that virus. There were only 10 people allowed in the church and even at the cemetery. There were no hugs and no handshakes. There was no get-together, neither before nor after the funeral, to share the grief and to share the happy and funny and sad stories of her long life. Terry was the last person of the generation of our parents. She went with all of us on a tour of the American SouthWest, in a 14-seater bus, from Phoenix to the Grand Canyon, the Hoover Dam, Las Vegas and Hollywood. Even on a day trip into Mexico/Nogales. She was the oldest in the group but always the first to explore. With great panache and unstoppable energy. We will miss her physical presence, but her adventurous spirit will always stay with us.

For Pádraig to be there yesterday was important, for him and for Terry and for all the family.


In happier news: Pádraig’s video calls with his friends continue.

It’s so inspiring to see him having fun participating, remotely, in the banter, the craig, and the news of his friends. Being with them in person would, of course, be even more fun. But this is a pretty close second. Wouldn’t you agree?