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?

Carefree

When all the garden fences have been painted, the space under the stairs cleaned, when Netflix looses its attraction, some people turn to quizzes.

I did a personality test helping me to find out: “Which Derry Girl are you?” – I hear you…

Apparently, I am like the character Orla: I “love life and live it whatever way” I want. “Independent, fun, and completely carefree”. To tell you the truth: I never had much faith in these kind of tests.

Whatever about personality tests… If you don’t know the “Derry Girls”, they are well worth watching and can easily be found on YouTube and other platforms. Even if you have watched the series – you can watch them again. They will still be funny even after many times of watching.

So I moved on swiftly to something a bit more serious: “How much do you know about the Coronavirus?

Turned out, I knew less than I thought. Having been exposed to non-stop news about the virus, you will probably feel, like myself, an expert on any aspect of the virus. But no. Turns out there is more to it than the news tell us. Maybe I’m too carefree?

Pádraig did a few quizzes this week. Although he finds the “Derry Girls” very funny too, we skipped that one. And even we might not know everything about COVID-19, we gave that a miss as well.

For the first set of questions, we went for the DIY approach and made up the questions ourselves. They were short and not really difficult, but addressing different fields of interest and ability.

He answered them using his bleeper. One bleep for Answer (1), Two for Answer (2), and Three for (3). He answered all the questions correctly.

Except the last one, where he bleeped just once, when we were sure that Carrick-on-Shannon is in Leitrim. Knowing Pádraig, we double-checked. It turned out that this was, not by design but by accident, a trick question. The Shannon runs through Carrick and divides Leitrim from Roscommon. The town might be best known for being the biggest town in Leitrim, but it is also in Roscommon – which was the answer Pádraig went for- just for the fun of it and to make it less obvious…

The next day, we decided to make the questions a bit longer, slightly more complex. Actually, not making them up ourselves but copying them (except the maths question) from the Irish Times “Irishology” Quiz.

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Again, he got all the answers right. For the maths, he first bleeps the tens, than the single digits.

I kept the best and most amazing aspect of the quizzes for last: We never read any of the questions out, but typed them out on his iPad before showing them to Pádraig.

The fact that he could see the questions, read them, process them (the short simple and the longer more complex ones), pick or calculate the right answer, and communicate it to us with his bleeper blew my mind.

For Pádraig it was fun and carefree – most of all because he was able to demonstrate to us his abilities. Which we still tend to underestimate. After all these years, we should know better.


Pádraig shares his birthday with the mother of one of his closest friends. She decided to undertake an 85k walk over 29 days – which will bring her right to her’s and Pádraig’s birthday. – What a brilliant idea for a fundraiser and thank you, Raphael, from Pádraig and all of us!


On “Saturday with Cormac Ó hEadhra” yesterday, there was the first honest discussion, with an academic from the University of Maynooth who very openly questioned the effectiveness of lockdown if the vast majority of COVID-19 cases happened in certain places, and that tests were effectively useless if results are received a week or several weeks later. (The recording of that programme is not yet available but will be in the coming days, I am sure.)

Yesterday, there also was a very interesting letter in the Irish Time by Dr Irwin Gill, Consultant Paediatrician, “Rehabilitation services are crucial

A bit earlier last week, a University of Cambridge based research group published an article in the world-famous magazine “Nature”:Olfactory sniffing signals consciousness in unresponsive patients with brain injuries. In their article, the authors state that there is an

“error rate of up to 40% in determining the state of consciousness in patients with brain injuries – These diagnoses and prognoses are crucial, as they determine therapeutic strategies such as pain management, and can underlie end-of-life decisions.”

Imagine the uproar if there was a 40% error rate in #Cancer or #covid19 diagnosis that would inform end-of-life decisions.

(Reports on this article and the astonishing results presented by the research group were published in several news media, including Science Daily and Technology Networks.)

If you are interested in the topic in general, you might want to read an article by Helen Thomson published in November of 2019. It was headlined: “Why the line between life and death is now more blurred than ever – Brains resurrected after death, communications with people in comas and advances in cryogenics all suggest that life’s end is less final than we thought.”

Und es hat Zoom gemacht

This year’s Oktoberfest has been cancelled (the picture below is from 2019).
The big beer garden in Munich will remain empty this year.

But we can create our own Beer Gardens, our own Oktoberfest,
having a beer in our own gardens.

Doing this in April is called “Vor-Feiern”, a great German concept, only matched by “Nach-Feiern” – basically allowing you to have your Oktoberfest any time you feel like it.

But what about the great company that makes an Oktoberfest (big or small) so much fun?

Having a cold beer in the back garden on a warm, sunny Saturday afternoon chatting to his friends on Zoom is now one of the highlights of Pádraig’s week. The truth is that he is not (yet) chatting using words, but listening and ‘chatting’ by showing his reactions to the stories, news and opinions shared by his friends, answering the occasional direct questions using his different ways to communicate.

(Remember Dr. Mehrabian’s study showing that 55% of communication is visual, 38% tone of voice, and only 7% spoken words?)

To be honest, I am not 100% sure of what exactly is going on during those video calls, because I am not there when they happen. Which is brilliant. One of his sisters helps him with the set up and participates with him. It’s one of the few things, where we (the parents) have no role to play in his life.

An hour of Independence Day for Pádraig.

A bit like pre-accident time, when he would not have been very happy had I shown my face while he was meeting, chatting or partying with his friends. (Because they were his friends and I was his father – two different circles:).


Last week, one of our neighbours and father of children who had gone to school with ours, died of COVID-19, having spent some time in hospital. We attended the funeral online and when the mass was over, one of us went out to the house to pay our respects to the family, to see the hearse passing by. There were hundreds of people lining the street, all 2 metres apart from each other. There was music and song to celebrate his life, all out on the street. It was so very very moving. The huge attendance and support shown by everybody, the family, the friends, the neighbour, even our the local postman, could not have been more uplifting and powerful.

“Grief in the time of Covid-19”: Louise Byrne attended the funeral of a much older man, 92 year-old PJ Grealish from Tuam, Co Galway, and reported on it on Morning Ireland last Friday, 24 April 2020, interviewing people who had a similar experience with a funeral as ours in these very different times. During the course of her report she interviewed Tuam undertaker Joe Grogan, who is the father of Sane, who suffered a severe brain injury some years ago and who we have been in touch with for many years now.


Two families who are also attending the An Saol Day Rehabilitation Centre with their son who suffered a severe brain injury, were on RTÉ Radio One this week.

Louise Byrne reported on the impact of Covid-19 on younger people with disabilities in nursing homes. Morning Ireland, Tuesday, 21 April 2020.

During that report she talked to Robert’s parents, Helen and Brendan. What they said has been on my mind all week. According to Louise, they had not seen Robert in six weeks and had told her that they wanted to have Robert home more often but that the possibility of getting a care package that would allow them to do this was akin to winning the lottery. Helen said, that it is usually at 1am in the morning that the demons set in with her. “Suddenly it just hits you and you say to yourself: will I see him again, will he see me again?” Brendan described the situation as “difficult”, saying it was hard to find the right words.

(In November of 2019, Adam Higgins wrote that the Ombudsman launched a probe into the HSE over allegations that young people were forced to live in nursing homes. Estimates vary, but there are probably 1,400 young people living in nursing homes today.)


Even if you don’t speak German (nobody is perfect:), it’s worth watching Klaus Lage singing: Tausend und eine Nacht – und es hat ZOOM gemacht!

“Alles war so vertraut und nun ist alles neu” – All was so familiar and now all is new.

It’s sooo old. Sooo German. And the first time I heard that word.

Good Things

A TV ad shows a baby’s stomach retracting during the night and how this particular nappy they want us to buy adjusts. Each time I watch the ad I am getting so jealous of that baby. I wish my stomach retracted. Instead, it’s expanding. Despite my very best efforts.

Ireland has been very successful in flattening the curve. I, unfortunately, have lost that battle.

It’s not for lack of trying. And there is always hope combined with determination and perseverance.

One of the mornings this week when I got up early for my regular ‘run’ (you know what I mean), I heard  this loud shout coming from the direction of Pádraig’s room. I thought I was hearing things because that was not the voice of Pádraig’s carer and it could hardly have been Pádraig himself, it was so loud.

When I returned from my run and talked to the carer, they told me that Pádraig had used his voice during that whole night and gave a big shout early in the morning. It was that shout I had heard.

Pádraig has been using his voice over the past months, but he usually needs something to initiate sounds. Like when he drinks, or just before or after a cough. He then manages to clearly pronounce vowels, such as “a”, “e”, “o”, “u”. That night, he didn’t need any ‘initiator’. A brilliant first and, hopefully, a sign of more good things to come.


I came across a blog last week, called Transitioning Angels, written by Tracy, a lone parent to two sons, aged 12 and 8. Brendan Bjorn (12) is severely disabled, medically fragile, and has very high palliative care requirements. Her latest blog was on “The Disabled, their Family Carers, and COVID-19 in Ireland“. As she is mowing the grass in her garden and recalls how her father explained to her the difference between weeds and flowers, she wonders:

Would my own dad consider this grandson, whom he never got to meet, as a weed to be discarded as other family members have suggested, or would he see him as I do, as a happy blossom of love and light?

That sentence staid with me. It is almost beyond my comprehension.


Good Things Come To Those Who Wait is a wise saying – and a Guinness advert from 1995. I still like it. The saying, the ad, and the Guinness. And I really look forward to the day I can have that pint in good company and a nice public space.

Although I tried, I couldn’t find the Pampers advert with the baby’s stomach shrinking. No problem to find the Guinness ad. Enjoy!

There was a follow up ad a few years later, Horses and Surfers – for those who can wait.

And the music? – Almost as good as the magic Italian original from 1958 by Gloria Christian.

The Big Picture

This is Easter and what better time for a new beginning and hope for the future.

There really isn’t a more powerful story I know than that of Jesus going through the most difficult time imaginable and coming out at the other end, giving others hope and strength and a ‘mission’ in life to help others.

Sometimes, I think my life gets lost in details and the big picture gets too little attention. The big picture being, more or less, what my New Year’s resolutions are all about: spending more time with friends and family, healthier lifestyle, being kinder to others. (These resolutions are so good, I never change them.)

I get upset about my life not being organised enough, about things not happening as I think they should, other people (oh, other people!) just not getting it.

And then I have (rare:) moments of clarity. When I think that the world and the people living in it will never be the way they ‘should be’. And that this is a good thing. That the only thing I can do is my best. Not more. But also not less – and that includes being ‘cool’ with whatever is on today. Not getting upset or irritated, not becoming hopeless, not to despair. Recognise and acknowledge reality with all its challenges (had considered to use another word here:) and move on to the Big Picture.

In the time before his accident, Pádraig’s, let’s call it ‘disposition’, had moved on from that of a typical teenager (and many adults) with a pretty low level of tolerance to that of the coolest person I’ve come across in my life. Someone very close to him explained that change to me: It happened because he was happy.

Now, there aren’t many people I know with a more challenging life than his – and there isn’t any other person I know who is ‘cooler’ about his life than he is. Happy, even when life gets tougher than it should. I guess, Pádraig is my Easter, full of hope, generosity and love.

Literally, the Big Picture.


Last night, people lit up lights all around the country and Sinead O’Connor sang a beautiful version of ‘Run’ from Snow Patrol. Light up, light up. As if you have a choice.

PS: Next on Youtube was Sinead’s version of Nothing Compares to You. Couldn’t get much better…Light up. Because you have a choice:)

 

The Goal

“The goal falls short of the reach” – Do we achieve more than what we aimed for?

It’s Palm Sunday today but also, as a friend reminded me, Passover, the Jewish Thanksgiving, when God told the Jews to stay in their homes while he sent a plague to wipe out the Egyptians

We have been staying at home. Kind of a prolonged Passover, hoping the plague will disappear eventually.

I think Pádraig is a bit bored. Nothing new you might say, if you’ve known him for some time. He had got used to a busy day, An Saol in the morning, Hyperbaric in the afternoon, visitors and visits.

We are still around and we hear and see a bit of neighbours and family, even from a distance. I suppose it could be worse. It can always be, as we have learned.

He is doing a new-ish exercise on the ground, pushing his right leg, the one he has the problem with, up and down an incline.

The idea is to push his right leg a bit out to the right so that his femur stays in the hip while he is exercising his muscles which will, once they get strong enough again, hold his leg in his hip. Great idea by the physio who has been working with him for years.

Since Pádraig started to have his hip problem, it became harder for him to cycle his MotoMed. He then got a new manual wheelchair which positions him just a bit differently in front of the MotoMed. And that small change made it even more difficult for him to cycle. But check out what he did during the week:

More balance of power between his two legs, more speed and more power than ever before. It’s moments like this that make me really happy. And him even more.


What does it make me feel like? –

Being endlessly bombarded with the number of deaths, the number of infected, the number of coffins, the number of stranded travellers, the number of harbourless cruise liners, the number of…

With nonstop warnings that I am not allowed to –

exercise outside for too long, be too close to others, visit others, get away from home for more than 2km, attend the dying, or their funerals….

That I should

wear gloves and a face masks, take every person as an infected threat to my health…


Leonard Cohen – The Goal

I can’t leave my house
Or answer the phone
I’m going down again
But I’m not alone
Settling at last
Accounts of the soul
This for the trash
That paid in full
As for the fall, it
Began long ago
Can’t stop the rain
Can’t stop the snow
I sit in my chair
I look at the street
The neighbor returns
My smile of defeat
I move with the leaves
I shine with the chrome
I’m almost alive
I’m almost at home
No one to follow
And nothing to teach
Except that the goal
Falls short of the reach

Some of what I found in the news…

02 April 2020
BREAKING: COVID-19 death toll in Ireland rises to 98
Of the 13 that have died today, 9 are male while 4 are female, with a median age of 91.

Central Statistics Office (accessed 04 April 2020)
In the period 2010-2012, life expectancy at birth was 78.4 years for males and 82.8 years for females.

Journalists are helping to create a dangerous consensus
(Declan Lawn, Irish Times, 16.11.16)
We are getting ever worse at going against the dominant consensus. Fewer and fewer of us are anti-authoritarian enough and difficult enough to go with our gut and challenge the narrative. These days journalists are not rewarded for being difficult. A culture does not exist in which a journalist can render an alternative narrative without being dismissed as a loonie leftie or alt-right conspiracy theorist.

Cocooning

I was wrong last week. ‘Social distancing’ is not going to be the 2020 word of the year. It’s going to be ‘cocooning’. I had to look it up and learned that it was first used in 1981 by no other than Faith Popcorn. (I mean, if your surname is ‘popcorn’ which responsible parent would call you ‘faith’? And then you invent ‘cocooning’ working as a trend forecaster…)

Pádraig is fine, was it not for his femor/hip and the muscle(s) not holding the two together tightly and in place. And the helpless feeling of not knowing if there is anything we could do to help him getting better.

This is not the only problem we have come across since his accident where I thought “this must have happened to other people before, there must be someone with the knowledge and experience to tell us what to do” and then there wasn’t. So he keeps exercising and we keep trying our best to help him. We keep learning and we hope that the hip will get better again.

We are so happy to be together. The weather is getting warmer and Pádraig sits out in the garden almost every day, on sunnier days with an ice cream, listening and contributing to our chats. With summer time starting today, there will be a noticeable longer stretch in the evenings.

I miss the whole family being together and each time one of Pádraig’s siblings calls in, keeping their distance, it’s really nice though necessarily short. About once a week, his friends have what used to be called a videoconference and Pádraig really enjoys taking part in that, helped by one of his sisters. It’s now called ‘Houseparty’ and it’s a ‘group video chat’ by a company called ‘Life on Air Inc.’ I’ve seen it working a little and from a distance, but mostly hear the laughter and animated conversations from somewhere else in the house.

During the week, we tried out what 8D music sounds like. If you haven’t already, try it on Spotify or whatever you use for music, best with headphones. It’s amazing. A bit like 1975 Bohemian Rhapsody on steroids.

We still have to ask Pádraig for his opinion, we’re still trying to find ways for him to take the initiative to intervene – though I wonder whether we are always attentive enough to notice when he (undoubtedly) does.

Pádraig’s carers are thankfully still supporting him and us, being very responsible and diligent about keeping their distance from groups, washing their hand, and following all the other guidelines.


So if ‘cocooning’ was invented in 1981 why do I think it will become the 2020 word of the year?

Because in 1981 it described an action, an attitude, something people chose to disconnect from the crazy world around them, it was something nice and cosy.

Today, it’s a government restriction imposed on the over 70s and the vulnerable “living in their own home, with or without additional support or in long-term residential facilities”, officially since last Friday, but effectively in operation since at least the previous week.

It’s not cocooning, nice’n cosy and by choice.

If you’re over 70, or if you had a severe Acquired Brain Injury, or if you are living in a nursing home, you can’t go out nor should you have visitors. You might find it hard to understand why all of a sudden life around you has come to a complete standstill.

Luckily, I am still under 70. So I went out for a walk in this new quiet, unpolluted, isolated world early this morning. My imagination took me away.

I woke up and heard my mate calling me from a distance
so far that I had forgotten it existed.
It was bright but the cars below our nest
were parked and silent.
It was day but the city was asleep.`
What had happened?

I swam up the river and saw all its turns in the distance
so far that I had forgotten it existed.
The light was shining right down to the river bed
through the clear unpolluted water.
No plastic bags, no industrial waste.
What had happened?

I looked out the port hole and saw the earth’s cities in the distance,
so many more than I had remembered existed.
The clear atmosphere revealing the Earth again
as Major Tom had seen it first.
Smog was lifting, the oceans blue again
What had happened?

Rays of light made its way through the tiny window in my room
so little that I could just make out its deserted outline.
My fingers can’t press the button.
My voice is silent.
Is anybody out there to be with me, to explain
What has happened?