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?

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.”

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.

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.

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 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

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.

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?

How is Pádraig doing?

Life goes on. He is trying to keep a work-life balance. ‘Work’ being a good rehabilitation programme, ‘Life’ being a good time with family, neighbours and friends.

Pádraig went to a therapy centre in Lindlar/Germany specialising in Speech and Language therapy for some weeks a bit more than a year ago. His rehab programme has continued at home and, since January, in An Saol’s Day Rehabilitation Centre, in the company of other families, supported by a team of enthusiastic therapists, new and familiar ones. He has continued to travel and went to several places around Europe. His friends are visiting and he goes out to meet them. He has been at parties, walks, and some truly amazing fundraisers.

Life has been full of surprises. Some good, some pretty challenging. Most of incredible intensity. I try to learn from all of them.

One day, many years ago, Pádraig asked me to promise him not to never ever tell any of my jokes again, at least not in front of other people, especially not his friends.

I am on my own here, nobody is listening. And, strictly speaking, it’s not even my joke.

It’s an old Jewish joke about Man making plans and God laughing. Like any good jokes, it’s short.

It connects well with a psychological condition described for the first time in the 1970s by Ellen Langer, a researcher at the University of California. Where else and no better time than the 70s.

We all make plans. And not just that. We believe that they will work out as long as we just try hard enough. When our plans by chance then work out it reinforces the illusion that we are in control. It’s what we believe makes up a “happy, fulfilled life”.

Sister Stan and Fr Peter McVerry said last week in separate interviews on Radio One that the current situation demonstrated how fragile our world is. That we now have a chance to re-adjust our views on ‘return on investment’, on growth. On the destruction of our environment, our social fabric and our relationships. That it is wonderful to see how people rally and care for each other. That we are learning how to handle situations today which yesterday we thought we couldn’t even face.

“Social Distancing” is going to be the 2020 Phrase of the Year.

“We are all in this together” is going to be the Lesson of 2020.

When this is over, we’ll all be living in a different world.

I will be taking a short break from the blog due to illness.

It hasn’t been my day.This morning, when I was on my way back to Lindlar a car pulled out of a side street and crashed into me. The brand new Opel Adam I had rented got a big dent in the front and I got a big fright. Luckily, no-one got hurt and I was able to drive the car to the nearest rental station. My family then gave me a lift to a train station from where I got a direct train to the airport. No Lindlar today. I took a direct train to the airport because nowadays it is risky to rely on connections when traveling with Deutsche Bahn. For the day that was in it, I shouldn’t have been surprised that the train broke down just 10 minutes out of the airport, we all had to wait and then change over to a different train.

I’m now sitting in the airport waiting or the plane to take off in about an hour and a half. I don’t want to think about it too much but I’m wondering what’ll happen next.

Even if everything goes right tonight, I’ll be landing in Dublin just before midnight.

Knowing I’ll be traveling with Ryanair, anything is possible. Nothing will surprise me.