I learned a long time ago that reality was much weirder than anyone’s imagination. Hunter S. Thompson
I wrote this 10 years ago:
I started this blog on 11 November 2013, the day Pádraig and I got ready to leave Ireland for Germany. Pádraig had been hit by 4.3-ton van on 27 June 2013, at around 10am, on Rt.6A, Cape Cod, Massachusetts, USA. He acquired a severe brain injury (ABI) and has been in a coma since, although showing sign of minimal consciousness. Following two and a half weeks in Cape Cod Hospital, Hyannis, an air ambulance had brought him to Dublin where he arrived on 15 July. Over the coming months, we became deeply immersed into Beaumont’s frontline. We learned, how the Irish health system is working at a time of cuts, scandals, and disillusionment at every level of care and therapy. We learned, how people with acquired brain injury are treated. After nearly four month in a six bedroom High Dependency Unit (HDU), with the prospect of remaining there for another nine months, until one of the three beds available in Ireland and suitable for Pádraig would become available in the National Rehabilitation Hospital (NRH) in Dun Laoghaire, we decided it was time to leave.
Everything in the blog is my own, very personal experience and opinion of what has been happening to us since that morning on 11 November 2013. But I think a lot of what has been happening to us is far from being unique. Therefore, I hope it will shed some light on how different health systems deal with ABI. I am usually writing the blog at the end of a long day of work and hospital visits, with a bit of driving and shopping thrown in. While I am trying, I am usually so tired that I find it impossible to re-read what I have written, I just fall asleep on top of the keyboard, so mistakes might slip in which, I hope, you will excuse.
Please share the blog.
Reinhard
Maria, Pat and myself were with Pádraig in a Hamburg hospital where he had just arrived. We didn’t know then that we’d be there for a while, wearing protective gowns, gloves, and face masks. Until he was discharged 14 months later. Imagine.That was what Pádraig saw of us and anybody else who visited him.
10 years after, Pàdraig is playing the tin whistle and is just back from a friend’s wedding which he immensely enjoyed. The company, the food, and the drinks.
I am no longer writing the blog every day, just once a week. And I am no longer falling asleep on top of the keyboard when I am writing it. Mostly.
The last ten years feel like a 100 life times. An eternity without a beginning or an end.
It was a 22,500 sell-out event last Sunday. 16,540 runners turned up on what was a pretty cold and rainy day. 16,347 of them crossed the finishing line. I was one of them.
Dublin is much harder than Hamburg. I knew that from previous years, pre COVID. There are no hills to talk of in Hamburg.
I really wanted to do this, maybe because I wasn’t too sure whether I could. I didn’t really tell people about it.
In the end, I finished Dublin in much the same time as I had finished Hamburg earlier this year.
I have been recovering all of last week.
When I crossed the finishing line, I felt over the moon.
A good friend who had followed me from the start, on his bike, and I then had to walk for a another few kilometres from Merrion Square to Parnell Square to find a pub that was not overcrowded to have that all motivating quiet pint and a good chat.
The following day, I signed up for 2024, both in Hamburg in the spring and Dublin in the autumn.
I’ll do it for that pint at the end. For Pádraig, our family, friends, An Saol, and myself.
With confidence.
Last night Pádraig went to see Mary Black in Vicar Street. He had met her years ago in Donegal for the first time, and then again in the Inveigh Gardens at the Bell X1 concert this year.
She was supported by her Australian friend Shane Howard who wrote Don’t say ok, also performed by Mary Black. And then Roisin O came on stage. What a voice! I knew her name but had not heard her singing before – and only realised later that she is Mary Black’s daughter.
As an encore, Mary Black and her friends performed a cover of Dylan’s I Shall Be Released, with a reference to the Middle East.
It was a brilliant night out. Heaven had its way and fear had lost its grip, all harmonised. With brilliant music. And hundreds of happy people singing along with Mary’s songs.
If your life is a rough bed of brambles and nails And your spirit’s a slave to man’s whips and man’s jails Where you thirst and you hunger for justice and right Then your heart is a pure flame of man’s constant night In your eyes faint as the singing of a lark That somehow this black night Feels warmer for the spark Warmer for the spark To hold us ’til the day when fear will lose its grip And heaven has its way And heaven has its way When all will harmonise And know what’s in our hearts The dream will realise
If I am more fortunate than others I need to build a longer table not a taller fence. Tamlyn Tomita
I had never heard of Tamlyn Tomita. Turns out she is an actress, quite respectable but not too famous. She must be a very wise woman. There is no other way I could think of that could have expressed better what I have felt and thought over the past few weeks.
The PdD student from UCD came back last week. This time, he brought along an engineering researcher who knows all about designing and making structures. The two were experimenting with the Handscupe, a device very generously donated to Pádraig by its medical device manufacturer. They developed the Handscupe as an innovative, therapeutic positioning device especially designed for the hands. The use of Handscupe in physiotherapy or occupational therapy can have a sustained positive impact on therapy outcome. Over the past months, we have re-purposed it somewhat to help Pádraig along.
Here are the videos with Pádraig using it to communicate and to have some fun playing electronic instruments.
Answering questions.
Playing Drums.
Playing the Bells.
Last week, Pádraig told us that he felt fortunate. To be with his family, to have his friends around, and to be able to go to the An Saol Centre. Of course, he didn’t feel lucky for having had the accident ten years ago. Who would. He could have done without it and still feel fortunate.
This is hard to fathom for me and, I guess, for any of us. We couldn’t even get close to understanding Pádraig’s life and the situation he finds himself in since that day in June of 2013. That split second when the driver of the pickup truck didn’t watch the cyclist he was overtaking – but, most likely, the other car that had just pulled out of a side street and was now, all of a sudden, heading straight towards him. The driver that was never prosecuted. The insurance that never paid. The doctors who were pushing us to donate his organs. The health system that badly failed him.
While Pádraig is right that he is fortunate to have so many people around to help, support, and encourage him. To crack jokes, enjoy concerts, and discover new worlds with him. It is extraordinary for him to see his life this way.
There are no words I can think of that could even get close to capture or describe his forgiving, generous, resilient, and beautiful mind. It is that mind that has allowed us to build a longer table, instead of higher fences.
Playback on RTÉ Radio One on Saturday mornings is a programme Pádraig listens to most Saturdays. Yesterday, they played a clip of our good friend Vincent reading one of his poems, which he had called “Beckett on a Boreen”. It’s just under two minutes, totally absurd, brilliant and incredibly funny. Only in Leitrim. Listen to it. It will brighten up your day.
Beckett on a Boreen by Vincent Woods
There were another few reports from the past week that caught our attention.
Like the one in which a journalist reminded a politician that after the last really bad floods in Middleton, Co. Cork, in 2015, they had promised to build flood defences within five years. Last week, the town was, again, totally flooded, the livelihood of many people destroyed by masses of water – three years after the flood defences were supposed to be built. When the politician blamed the complicated and slow planning process, the journalist stopped him and checked whether he had heard that correctly: the Government blaming their own bureaucracy for grinding desperately needed projects to a halt, or, even worse, preventing the projects from starting in the first place.
Even when everybody agrees, including the Government, things don’t happen, not because of a lack of funding, but because of bureaucracy not working.
Sounds familiar?
Yesterday, Pádraig went down to Griffith Park to check out the water levels of the Tolka.
High Water Levels at the Tolka River in Drumcondra
No flooding yet in Dublin, but really high water levels. Pádraig likes his special ptosis glasses that help him to keep his eyes open and take in his surroundings, including a quick snack at the little café in the Park.
I asked Pádraig whether it was ok with him to blow his cover (and that of his friends who accompanied him). Not everybody would lightly admit to have been to an S Club 7 gig like the one they went to last Monday night. They said it was ok.
You can see how much fun they had.
Life must be about having fun. Even, or especially, when faced with the absurdities of life. I can’t go on. I will go on. Sun, Moon. Moon, Sun. What is it?
Oh Jaysus, lads, sure, how would I know? I’m not from around here.
We’ll have to wait for Godot. With Beckett on a Boreen. In the city. In our everyday lives.
Do not go gentle into that good night but rage, rage against the dying of the light. Dylan Thomas
I think Dylan (Thomas) dedicated the poem from which this line was taken to his father. It’s message, for me, is that we should live life to its fullest, make the very best we can out of it, burn and rave. While knowing that death is inevitable we owe it to life to value and respect it. Giving in and resign is not an option.
Pádraig did 30 squats last week during just one session in the An Saol Foundation Centre with just a little bit of guidance. When I watched him doing it I began to wonder whether I would be able for this. Then again, I’m more than 30 years older…
30 Squads – Try It Yourself and see how you feel after:)
We wanted to go to a small Spanish restaurant. When we eventually tried to book a table, it was full. On the advice of Pádraig’s younger sister, we tried and got a table in Hawksmoore – a new restaurant “everybody” is raving about.
Apparently, the place, located in the historic National Bank building in Dublin’s College Green, was voted Best Steak Restaurant in Europe. It’s run by two Irish Brothers who set up similar restaurants in New York and London.
It was a real nice evening, giving us time to enjoy and savour, and to reflect on, life.
The most challenging question for which I have not found an answer to is how anyone can decide that someone else’s life is not worth living? How anyone can decide to deny the support a fellow human needs to enjoy life, tu burn and rave?
I am all with Dylan Thomas. Rave and rage against the dying of the light. Don’t go gentle into the night. We have to make the most out of the days we’ve got. And we need people to support us when we that becomes necessary.
It is not a lack of love, but a lack of friendship that makes unhappy marriages.
Friedrich Nietzsche
Pádraig was groomsman at his sister Maria’s wedding last week. He, along with our two families and friends, thoroughly enjoyed the ceremonies, get togethers, and the celebrations with our two families and friends. First, and earlier in the week, in our church with the signing of the civil register, followed by a small get together of the two families in the evening. Then, a few days later, in a beautiful country estate the humanist ceremony with around 130 guests, followed by an all night brilliant party.
Not everything worked out exactly as planned. For one, the Child of Prague only delivered on the first day: although he was put out in the garden before the wedding we weren’t exactly blessed with glorious sunshine on the second day..
The first pictures of the Bride were taken in our back garden. After that, we went across the road into the church which I had never seen as nicely decorated with stunning flower arrangements. The civil register was signed by the happy couple in the Church, as well as by the official witnesses, including Pádraig. He had practiced his signature and did a brilliant job on the day.
Maria was driven in a 40+ year old BMW by her husband’s grandfather to the humanist ceremony a few days later. The ceremony this time, was almost entirely conducted in Irish.
The couple had decided that they would, rather than offering a ‘favour’ to their guests, making a donation to the An Saol Foundation – a very thoughtful gesture that was very well received by their guests.
We all, including Pádraig, had a fantastic day which later spilled over into a long night with the best company of new and old friends, as well as our two families.
I’ll let the pictures speak for themselves,
I wish Maria and her husband happiness, love and good health for their life together.
With a huge “thank you” to all who made the past week one we will never forget.
Love was all around us. But, above all, friendship.
A belief in hell and the knowledge that every ambition is doomed to frustration at the hands of a skeleton have never prevented the majority of human beings from behaving as though death were no more than an unfounded rumour.
Aldous Huxley
Aldous Huxley was one of those writers, I felt I had to read when in my late teens. Like Charles Bukowski, William Burroughs, Jack Kerouac, or Carlos Castaneda. Today I think I was too young when I first tried. I don’t think I really understood what I was reading.
I don’t have (or take?) the time anymore to read much. But when I come across my ‘old’ favourites today, I see much more humour in their writings than I did back then. And that’s what I like most about them.
Death: no more than an unfounded rumour.
That’s a classic. And it made me smile.
One of my favourite songs is “Everybody knows” by Leonard Cohen. In my mind, its point is that frustrations are based on expectations. Or, in the words of Antonio Banderas, expectation is the mother of all frustration. If you know that the dice is loaded, if you know that the boat is leaking and the captain lied, well – then you won’t be surprised and, thus not frustrated, when you drown, when it’s coming apart.
And yet, last week I struggled. Maybe there was just too much of what everybody knows, happening all at once.
But then, someone sent me a short video of a Tommy Cooper joke about a Mexican, a German, and an Irishman. And I smiled again.
Leon Trotsky once said that life is not an easy matter… You cannot live through it without falling into frustration and cynicism unless you have before you a great idea which raises you above personal misery, above weakness, above all kinds of perfidy and baseness.
In a way, I am lucky because I have this great idea that will carry me through life, despite deep frustration taking hold of me from time to time. And I have family and friends, compadres, who believe in the same idea.
It is this idea that raises us above personal misery, weakness, and all kinds of perfidy and baseness.
Death, after all, might just be an unfounded rumour.
Nobody is accidentally in Alaska. The people who are in Alaska are there because they choose to be, so they’ve sort of got a real frontier ethic. The people are incredibly friendly, interesting, smart.
Marcus Sakey
Could Alaska be a mindset, rather than a place?
A mindset that people don’t find themselves in accidentally, but that they purposefully choose?
People with a frontier ethic who push boundaries and who are incredibly friendly, interesting and smart?
Last week, I felt this frontier ethic a few times.
First, Pádraig experienced a couple of sessions in the Lokomat that were truly outstanding. Sessions he actively participated in, way beyond of what we had expected. Sessions were his supporters allowed him to push those frontiers further out. Sessions that were true game changers.
On day one, they experimented a little.
On day two, a method emerged: he pushed himself up straightening his legs; then he moved his legs, left and right; and only then did he walk on the treadmill of the Lokomat.
It was phenomenal.
Then, on Saturday, I did a bit of pushing the boundaries myself, attempting the Dublin Half Marathon.
Have a look at the pictures. There is a ‘before’ and there are two ‘after’ ones of myself, plus a view of the thousands of runners ahead of me – and a handful of them behind me: a reflection of how fast (or slow) people intended to run.
You can see: my ambitions were low. I just wanted to get over the finish line. Time did not matter in my case.
My friend who joined me in the park to cheer me on took a video just before the finishing line.
You can hear him shouting:”Come on, Reinhard. A few hundred metres more. Keep going.”
I was shattered after the race.
But I thought that what my friend had said to me was so true. No just in this situation, but in life. In many cases, we just need to do a few hundred metres more and keep going.
Several times during the race I had wondered why I was doing it. Whether I should stop and just go home. I’ve also thought that a few times in my life. Why making the effort? What for? Why keep going?
When I look back at Pádraig’s extraordinary exercise sessions of last week, and at my half-marathon, it was my friend who gave me the answer. We do this because we want to cross that finishing line which is often just around the corner. So we need to keep going.
Being able to do it requires friends and supporters: people like those from Alaska.
People who choose to do what they are doing. People who got a real frontier ethic. People who are incredibly friendly, interesting, and smart.
In your joy, in your happiness, in your achievement, we all benefit. Prince Harry at the opening of the 2023 Invictus Games in Düsseldorf
Having arrived back from Lourdes early in the week, I went to Düsseldorf where the Invictus Games were finishing and the annual RehabCare fair had just started.
I can’t think of a place in the world that would be comparable to Lourdes. Being there feels like being in another space of time. There are the tacky shops selling statues of Mary right beside quite dangerously looking pocket knifes. There is a very commercial aire around the declared holiness of the place. But there is also a sense of companionship that is hard to match.
One of the most lasting memories from Lourdes must be the participation in a candle light procession. Hundreds, perhaps thousands, of people walk around the huge square in front of the Basilica while praying the Ave Maria in a dozen or so different languages, singing the famous Ave Maria of Lourdes, and carrying candles protected by little paper cups – which at times, and especially when it becomes too windy, end up in flames. At the end of the procession, Pádraig had a front row seat, being able to see the choir and lectors, and observing the groups from different countries as they were arriving with their flags and banners for the closing ceremony.
Before going, Pádraig had been asked by a few people to light a candle for them in Lourdes. Another century-old tradition. Hundreds of candles of all sizes are burning day and night in Lourdes. When they’ve burnt out, their remaining wax is collected and recycled. The heat of the candles burning is so intense that some melt and bent before they had a chance to burn up fully.
In a strange way, Lourdes changes me each time I’m there. I wouldn’t want to stay there more than those few days our journey usually lasts. And normally, life back home quickly takes over whatever impressions I had brought back home. Though – I am getting a feeling that some of these impressions are being transformed into something more lasting.
I’ll find out.
Only a day after having returned, I went to RehaCare in Düsseldorf. It’s branded as the world’s largest rehabilitation fair. It was also around the time that the Invictus games Prince Harry had opened earlier were coming to an end.
Right on arrival, I was reminded that Germany is much closer to Ukraine than far away Ireland. A country-wide alarm was trialled which did not just sound from the rooftops but from every mobile phone around. Maybe it was meant to make you feel more secure – in my case it achieved the opposite.
RehaCare made my head spin. There was everything you could possibly imagine for people with disabilities, and more.
Here is a short, less than two-minute, video impression from my two-day visit.
I could easily have spent at least another day there.
There were sailing boats for assisted sailors, built in China at an affordable price and exhibited by the Münster Sailing Club; a dozen different sports on offer to people with different abilities from soccer, to cycling, to trekking; there were wheelchairs running on just two wheels if you wanted to get up the stairs in that chair; adjustable tables; foot warmers; nepalese ‘singing bowls’ for sound and vibration therapy; wheelchair accessible cars with robotic arms to store your chair away in the boot; a wide range of bicycles that carry wheelchairs; devices that looked as if they had been taken away from torture chambers; as well as brain-computer-interface games and competitions, balance training aids, and robotic arms able to bring food or drinks directly to your mouth. There was a glove, developed by students from the technical university of Aachen, which sensor your fingers’ movements and converts them into electronic signals allowing you to play games by just moving one or a number of your fingers.
What really made RehaCare for me, however, was being able to meet long-standing friends, many of whom have not just supported Pádraig and our family, but also the development of the An Saol Foundation and its Santry-based Centre.
One example of a chance encounter I had almost a year ago was with a small company manufacturing something that looks, at first glance, incredibly simple – but turns out to be quite sophisticated when you look a little closer or, even better, try it out yourself.
Here is what I mean. Just look at both of Padraig’s hands with and without the “Handscupe“. He can use the Handscupes when he is cycling – though they are much better for relaxation. “Yoga for the hands.”
The Handscupes are manufactured in different sizes to fit different types of hands. They are not just used in a clinical environment but also by professional high performance sports people, e.g. basketball players, for recovery and relaxation.
Or checkout the simple blue block I found at the RAZ shower and commode chair stand (Pádraig has one of these chairs for his showers) which can be positioned and removed in a second, and which will prevent Pádraig’s legs slip between the open gap in the middle.
For the first time ever, this yearI spent hours collecting information and talking to organisations who support people to plan and realise assisted living arrangements. Several models have been developed by different organisations across Germany over the past decades.
It was a mind opener to hear people describing mixed living arrangements with people from all sorts of different backgrounds, different ages, and different abilities. All realised by the most appropriate and suitable ownership arrangements: from private ownership to local government-owned, to cooperative driven.
There is no doubt that these models will guide us when we develop our own ideas for assisted living spaces with the An Saol Foundation.
Unconquered. – Because:
We are the masters of our fate: We are the captains of our souls.
We must accept finite disappointment, but never lose infinite hope. But I know, somehow, that only when it is dark enough can you see the stars.
Martin Luther King, Jr.
Back in Lourdes.
This time, we’re back with the fantastic group from the Dublin Dioceses. This time, the Accueil is open.
Many of Pádraig’s old friends are back too.
Whatever I think of the town and its pretty tacky shops, the commercialisation of organised religion, there is an atmosphere of calm and spirituality, it’s out of this world, and there is an attitude towards people who need our help that would be very difficult to find anywhere else. There are dozens of helpers who took their holidays and paid for their trip over to give a week to others. Some of them have been coming for decades.
It’s exceptional in so many different ways.
Hope is being mentioned every day. For whatever reason, I always felt ‘hope’ was something passive: you sat down and ‘hoped’ for the best.
Paul’s letter to his friends in Rome made me think again. He wrote, some time ago, that people who do not give up are helped. And that as we are getting this help when we not give up, we should be tolerant with each other and be united in mind and voice. Treat each other in a friendly way. That way, we’d live with joy and peace, and all boundaries of hope are be removed.
So, hope is anything else but passively sitting down and ‘hope’ for the best. It’s about not giving up. It’s about finding not just strength, but joy and peace. Fun.
Last Tuesday, Pádraig and the An Saol Foundation Centre were in the news again, when the Irish language news team interviewed Maria in relation to the recent Ombudsman report “Nowhere to go”.
Pádraig, unlike those mentioned in the recent Ombudsman’s report, Nowhere to Go, luckily had a place to go to.
It seems that not much has changed since we were asked in a Dublin hospital, just a few weeks after Pádraig’s accident ten years ago. which nursing home Pádraig was going to go to.
Our answer was clear. Although, then, we didn’t have much more to go on than our hope.
As it turned out, Paul in his letter was right: We were helped because we did not give up.
We didn’t loose hope.
Maybe because it was dark enough so that we could see the stars.
Hospi-Tales 