Most likely not the best transcription of the signature jingle of Rocky Took a Lover. Would Ding Dang … Ding Dang be better?
They played together for the first time in more than two years.
And they created magic on a wet wet night in a field in the shadow of the restored 15th Century Tower of Claregalway Castle.
It was a night when we all felt alive.
There had been moments when we doubted. The weather forecast showed rain. It was more than a two hours drive. We would have to stay overnight. They would play late into the night.
Then we decided to ignore the weather, to pack the bags, and to head off West.
It turned out to be the best decision we had taken in a long time.
And it was the mid-week beginning of a great week.
A very good friend of Pádraig’s arrived with a belated birthday present on Friday. A gadget that connects to an internet-based synthesiser and plays whatever instrument you want to play by touching it wherever you want. By creating circuits between different people, or water, or an orange – it plays music by squeezing the orange or by touching another person’s hand.
And Pádraig had no problem using his and our bodies as an instrument.
We ended the week with a mass organised by the Dublin Diocesan Lourdes Pilgrimage Group who had invited Pádraig to join them and the new Archbishop of Dublin, Dermot Farrell. We had not met him before. When he was leaving the Church he stopped by and spent a few minutes talking to Pádraig and to us. He is a kind, intelligent, compassionate man. He is quoted in the Independent as saying, referencing the writer LP Hartley:
“The future is a different country, we must do things differently there” adding “This is not to forget the past, and especially not the painful past where so many were hurt.”
I am all with him on this one. Only that there are too many who are still being hurt and who are still being left behind in the present.
I’ll shine for you. Then I’ll burn for you. Then I can shine for you. That’s what I’ll do.
Paul Noonan – Rocky took a lover
Paul is the front singer of Bell X1, one of Pádraig’s favourite bands, with songs like Rocky Took a Lover, The Great Defector, or Velcro. The songs have beautiful lyrics and many are based on real life stories the band or Paul experienced, deeply based in Irish culture. They are super cool with next-to-no-showmanship on stage. They have a seizable, very committed follower-ship – though they never made it really big.
Someone in An Saol who knew about Pádraig’s liking of the band told us last week that he had just heard that Bell X1 were going to play in Roisín Duff in Galway next week. We enquired whether the venue was wheelchair accessible, which it is, and bought three ticket straight away, before they were sold out. With the backlog of cancelled concerts from last year now slowly coming back on stream, it is next to impossible to get new tickets for the band.
We got the ticket, double-checked and realised that the concert is part of a 5-day open air event, Fall RightInto Place, in Claregalway Castle. Nothing like knowing what you’re doing…
Last week, Pádraig went out for a walk and decided to call in to McDonald’s in the Omni for a burger, al fresco. It was the first time in more than a year that he went to a ‘restaurant’. It was a bit of a complex setting but it worked out fine.
He also attended An Saol’s Summer Fest with great food, drinks, and – above all – live music.
Because of the weather, we could not have it outside in An Saol’s back garden, but the party was nonetheless a very welcome change and quiet entertaining. Even the MotoMed got some attention and became even more attractive with some summertime decorations.
We’ll head for Galway on Wednesday morning, have a little nap on arrival, before heading for the festival in the early afternoon, supported by big umbrellas, waterproof shoes, and rain jackets. We’ll spend the night in Claregalway and get back to Dublin the next day.
It’s fun for big adventures coming your way, especially when you don’t expect them.
It made me think of perceptions, rules, guidelines, expectations.
It was the expectation by the ‘system’ following Pádraig’s accident that he was to move from the hospital to a nursing home (“Which nursing home is he going to go to?”). Its perception was that he would no longer “have a life”. We were giving rules and guidelines telling us that we, his family, would have no say in the planning of his life and decision making about his future.
The Ombudsman has recently given his answer to that policy of placing young adults against their will and that of their families into nursing homes. He called it “Wasted Lives”.
No other than then Taoiseach Leo Varadkar was quoted in the Irish Times last year as saying on the Late Late Show that nursing home care for the elderly might not be a wise investment in the future, but could be organised along the lines of “disability care where it has in fact been official Government policy since 2011 to end congregated settings for persons with disabilities” – especially in times of a pandemic. While this work is obviously still in progress, it is official policy to facilitate community living for all people with disabilities – regardless of age or severity of disability. Of course, this is supported by the UN Convention on the Rights of Persons with Disabilities, which Ireland has ratified. It recognises institutionalised facilities as a violation of human rights.
In 10 years, sadly not much has happened on this front, because we follow the same old same old perceptions, rules, guidelines, and expectations about the needs – not so much of the people with severe brain injuries – but of the system that is supposed to assist them.
Last week, I came by a billboard showing Katie Taylor with a tagline saying: “Some people follow the rules, others break them”.
When I followed that up a little I found more quotes:
By Pablo Picasso: “Learn the rules like a pro, so you can break them like an artist.”
By the Dalai Lama: “Know the rules well, so you can break them effectively.”
By Banksy: “The greatest crimes in the world are not committed by people breaking the rules but by people following the rules. It’s people who follow orders that drop bombs and massacre villages.”
By Albert Einstein: “I have only two rules which I regard as principles of conduct. The first is: Have no rules. The second rule is: Be independent of the opinion of others.”
By Mark Twain: “Life is short, Break the Rules. Forgive quickly, Kiss slowly. Love truly. Laugh uncontrollably And never regret ANYTHING That makes you smile.”
The essence of all of this is, I suppose, that nothing has ever been changed by people following rules and procedures that created the current ‘system’ in the first place.
On Wednesday, Pádraig will – and not for the first time – do what is the right thing to do. And defy expectations.
There is no picture of Eamon, because I haven’t got one.
Eamon told me last Thursday that it was his 42nd anniversary working as an electrician.
I had called him in the morning because a trip switch kept cutting out the electricity supply to the downstairs part of the house.
A few hours later he arrived with a colleague trying to find the fault. First, I was worried about the food in the freezer and the fridge. Then I realised that I couldn’t recharge my phone or laptop while they were working. Before settling in to the fact that none of that mattered too much because the internet was gone as well.
Eamon tried to isolate the problem. One circuit after the other. While he was working away he explained what he was doing, asking whether this all made sense to me.
Eventually, he isolated the faulty circuit and put in a temporary fix.
He will be back on Tuesday to finish the job.
One small faulty wire somewhere and: no phone, no laptop, no internet; but also no washing machine, no dishwasher, no fridge, no coffee machine, no freezer; no hoist, no movement in Pádraig’s bed.
Nothing moved. All because of a small wire somewhere.
What would we have done without Eamon?
The kids are back in school and the weather couldn’t be better. It (nearly) always happens towards the end of August, beginning of September.
There is a week or two of gorgeous sunshine, blue skies and no wind.
The lavender in Pádraig’s garden is still blooming and attracting large numbers of bees. Sitting there and listening to the humming bees could make you forget that we are in the middle of a big city.
When we went for a walk in the park one early morning, we came across a few sets of exercise equipment. Really good to see that it’s so widely recognised that people need regular exercise that the Council makes the necessary investment for its people.
Unless they are in a wheelchair – in this case.
We have decided to spend what might be the last real summer weekend this year in the country. Relax, get a change of air and environment. We are so lucky that we can do this all together and that we are all enjoying it so much.
You might remember from some weeks ago that the locals who had worked so hard to set up a few brilliant country walks in the middle of nowhere had made a small bridge accessible for wheelchair access straight away after we had contacted them about some problematic steps they had overlooked.
We’ll be walking around that lake this weekend and enjoy a quiet BBQ. In the middle of nowhere. Relaxed. Care-free. Without a worry in the world.
We’ll forget about that small wire that caused so much trouble for a while.
We’re a very expensive group; we break a lot of rules. It’s unheard of to combine opera with a rock theme, my dear.
By chance, I started to watch Bohemian Rhapsody last night, far too late. But I kept watching it until the end, more than two hours later. It’s the 2018, absolutely amazing biographical musical drama about the life of the Indian descendant, Zanzibar born Farrokh Bulsara who changed his name to Freddie Mercury and became one of the most iconic music performers ever.
I always wondered why my father’s eyes filled up with tears, especially in his later days, when he was watching the Pope on TV. Last night it was happening to me. Watching this movie about Freddie. For no obvious reason other than that I found some aspects of Freddie’s life deeply moving. Some of his views so outrageously true.
He was out of this world and he expressed that in the songs he performed with Queen. Is this the real life? Is this just fantasy? Under Pressure. Radio Ga Ga. Killer Queen. We are the champions. Anywhere the wind blows. We will rock you. Love of my life. A kind of magic.
The original version of the real Freddie’s incredible live performance at the 1985 Live Aid in London’s Wembley Stadium has more than 100 million views.
The first week back in An Saol was brilliant for Pádraig. Two therapists had just come back from a short 1-2 week internship working with experienced neuro therapists in Burgau. It’s all still fresh in their minds and because some of An Saol’s other regulars were away on a break, they decided to practice some of the things they had learned with Pádraig.
They used Pádraig’s plaster of paris bespoke splints to stand him up against a wall and between two supporting therapy tables and blocks. Just like what is done in Burgau.
The therapists and trainers stood Pádraig up in the standing frame.
And we tried out an entirely new device, the Hasomed functional electrical stimulation (FES) device, controlling the famous MotoMed, stimulating Pádraig’s muscles and supporting as well as encouraging functional movements.
Everything has its price. The question is: is it worth it?
The straight, clear, unambiguous answer is: it depends.
Queen was definitely worth it.
So is Rehabilitation.
Spending relative modest amounts of money responsibly on training therapists, widening our horizons, accessing state-of-the-art equipment, pushing boundaries, – all in order to make life and living with a severe brain injury possible, to make our aspiration for true inclusion, participation and social justice a reality – is certainly worth any penny or cent we’re spending.
Have you every heard a rehabilitation centre echoing Freddie Mercury’s (slightly adaptive) statement:
We’re a very expensive group; we break a lot of rules. It’s unheard of to combine a severe brain injury with living a meaningful and happy life, my dear.
I haven’t. Ever. – Yet, these were the words of one of the world’s most famous, ground-breaking, mould-breaking, astoundingly successful artists.
Maybe it’s time to say it. To say it loud. And to say it proud. My Dear.
I guess now it’s time for me to give up I feel it’s time.
This is Saturday Night Fever on German TV. It’s mind boggling. Stunning. Beach Party on a beach wherever. With the Take That song Back For Good – in German. An extract from a programme that went on all night.
They were all so happy. What does it take to reach that state?
We went for long walks last week. The Arche Noah and their unique terrace where I worked as a teenager in a very different environment to that of today, the Promenade in St. Peter-Ording Bad all done up with expensive shops, and in Westerhever, where we discovered that while cars and walkers are facilitated to get up to the Deich, wheelchairs aren’t necessarily.
Also did some work on the house and found a few real gems, from an antique tin of paint, an ancient hoover, to a shell full of cleaning agents, one being made up to clean grave stones, Grabsteine.
This is the real McCoy. Summertime. Weird and wonderful.
Donde termina el arco iris, en tu alma o en el horizonte?
Where does the rainbow end, in your soul or on the horizon?”
― Pablo Neruda, The Book of Questions
When you look up the Chilean poet, diplomat, politician and nobel prize for literature winner Pablo Neruda you will find references to García Lorca, Miguel Hernández, and, of course, Allende. He was called a poet of the people and was, perhaps, Latin America’s most important 20th century poet.
I thought that I didn’t have an answer to his question.
Then I changed my mind.
Being away from a daily routine changes perspectives. Wide horizons open the heart. Shadows let you see yourself in a different light.
It was all there at the Eidersperrwerk. Having had a drink and a bite to eat, we went up to the wall supporting the gigantic barriers regulating the flow of the river. As we looked at them, we saw our reflections, as we stood together.
There are pots of gold at the end of the rainbow. Somewhere beyond the horizon. You can chase them. Hoping for the best.
No need to chase the rainbow that ends in your heart. It’s right there with you. You just have to see it and feel it – which, admittedly, can be tricky when you are busy.
Planet Earth is blue and there’s nothing I can do.
52 years ago this month, David Bowie became Major Tom. He took his protein pills, put his helmet on, checked the ignition and made the grade. The papers wanted to know whose shirts he wore. Eventually, it was time to leave the capsule (he dared). He stepped through the door and floated in a most peculiar way. The stars look very different that day. He was siting in a tin can, far above the world.
Two weeks ago, Sir Richard Branson flew towards space aboard the Virgin Galactic (NYSE:SPCE) Unity spacecraft, a critical test flight before commercial operations can begin.
About a week later, Jeff Bezos blasted to the edge of space aboard Blue Origin’s New Shepard space capsule, later thanking Amazon employees and customers, “because you guys paid for all of this“. (I couldn’t stop laughing when I heard he had been saying this.)
Nobody knows exactly how much Branson’s or Bezos’ space trip cost. Most likely dozens of millions. Most definitely more than Bowie’s trip. Even though I am nearly sure that neither Branson nor Bezos ever got as high as Bowie did half a century before them.
For most people, any journey will do these days. It doesn’t have to be space travel.
Just to have a change. See other people and places. Taste different food. Smell a different country side, maybe the sea. Feel the wind in their hair and the sun on their skin. Spend time with family, make new friends, create new memories.
For the next three weeks, we’ll take time off together and we will do exactly this.
What’s the most transformative thing that you can do for your brain today? – Exercise.
Wendy is Professor of Neural Science and Psychology in the Center for Neural Science at New York University. In her TED talk she asks her audience:
“What if I told you there was something that you can do right now that would have an immediate, positive benefit for your brain including your mood and your focus? … Would you do it? Yes!”
TED Talks are short. Try Wendy’s.
What she discovered, being a Professor and all, is, of course, not entirely new. Decimus Junius Juvenalis noted in about 100 A.D. in his Satires“Mens Sana In Corpore Sano”. A Japanese corporation picked the acronym of a slight variation of the same statement, Anima Sana In Corpore Sano, for their company name, ASICS.
“A healthy, or a sound, mind in a healthy body” captures in one sentence the knowledge that physical exercise is an essential part of mental and psychological well-being. And more.
Wendy’s research shows that exercise has an immediate effect on your well-being. She says that “a single workout (…) will immediately increase levels of neurotransmitters like dopamine, serotonin and noradrenaline. That is going to increase your mood, (…) improve your ability to shift and focus attention, and that focus improvement will last (…). Studies have shown that a single workout will improve your reaction times.”
She recommends to
Her research has shown that “you not only get better focus and attention, but the volume of the hippocampus increases as well. And finally, you not only get immediate effects of mood with exercise but those last for a long time. So you get long-lasting increases in those good mood neurotransmitters.”
She says that the most transformative effect that exercise will have is its protective effects on our brain. “Think about the brain like a muscle. The more you’re working out, the bigger and stronger your hippocampus and prefrontal cortex gets.”
Wendy says that you don’t have to become a triathlete to get these effects. She believes that you should get “three to four times a week exercise minimum 30 minutes an exercise session, and you want to get aerobic exercise in. That is, get your heart rate up.”
I’ll stop here.
I think about people who need this exercise but cannnot get it without help.
We are making a small start in An Saol offering those with severe injuries the possibility to exercise. Exercise that we know contributes to having a happier life and a healthier body.
There are other possibilities to exercise. Some are all around us. We just need to keep our eyes open and grasp the opportunity when it arises. This morning, we went for a walk along the seafront and discovered several exercise gadgets set up there by Dublin Corporation for people in wheelchairs.
Absolutely amazing and well done Dublin City Corporation!
The other very important issue of concern is, of course, the ability to communicate.
In that respect, Pádraig took a big step forward. You know that he is now using a switch above his left knee to access a speech app. That’s a position that works really well. We continue to customise his communication programme to make it easier and better for him to use it, to get his motivation going. A really small change on the options to express his opinion, mood, and wishes, brought him great fun last week.
I am sure he had been waiting to be able to say this on some occasions for quite some time.
This weekend is the warmest of the summer so far. Yesterday, the highest temperature ever was measured in the North of Ireland. Many people will be on the beaches, walk in the mountains or having a barbecue in their back gardens. We had one really enjoyable afternoon and evening yesterday with friends and family.
Gottfried (1646–1716) was a German rationalist philosopher, mathematician, and logician who in 1703 published an article in French called Explication de l’Arithmétique Binaire. This short article is widely cited as having made known the binary concept of on or off; yes or no; 0 or 1. Gottfried later noted with fascination how his system corresponded to the much older Chinese I Ching which he had been made aware of through the French Jesuit Joachim Bouvet.
A German philosopher publishing in French later referring to an ancient Chinese source. All happening around the 1700s.
Later, of course, the binary system was picked up and developed to operate computers, including the ASCII system, and to design autopilots. Many more scientists are now credited with its development.
So Gottfried, although unknown to him, had not really invented the binary system but is now credited with its invention because his article made it widely known. A bit like Columbus not really discovering the Americas, but making them known to the Europeans.
Pádraig communicates mainly with a switch, also with thumbs up or down, tongue left or right. Not necessarily, but mostly, binary. It’s yes or no. Binary. Closed questions.
It took me a long time to realise how complex that simple looking system is.
Imagine you are eating your dinner, with someone helping you along. At some stage, someone asks you, “Would you like an ice cream?“
This is a typical dinner situation with Pádraig. I help him with his dinner and, when the plate is empty, I ask him whether he would like an ice cream for desert.
Put yourself into Pádraig’s situation.
If he answers ‘yes’, that’ll most likely be the end of his dinner and he’ll get an ice cream. There is no chance for him to ask for more dinner; it’s finished because the plate I filled up is now empty. He might like something with his ice cream or no ice cream at all. But he might still be hungry and decide to go for the ice cream rather than not having anything else.
If he answers ‘no’, that’ll also probably be the end of his dinner, when he might still be hungry. But he is not given a chance to opt for more dinner or a different desert.
So the answer to that simple question might have little to do with him liking an ice cream for desert, but with all sorts of other consideration which I all eliminated by not asking the right questions in the right order and only leaving him the option of a binary response.
And this is a simple example.
Many people ask him ‘negative’ questions, such as “You wouldn’t like that, would you?” A ‘yes’ or ‘no’ answer could be interpreted either way.
You might remember that Pádraig said, when Trump went on the campaign trail, ‘yes’ that he liked him – and it took us a week to figure out that he liked him not because he would support his politics but for his entertainment value (which rapidly faded once he got elected).
One day, Pádraig said he did not want to go for a walk with me – which left me surprised because he always likes to go for walks. Until I figured out that he had heard that I wasn’t well at the time and he didn’t want to put more strain on me.
Pádraig can take decisions for himself. Of course. But it takes a lot to be able to understand him, interpret his decisions and to support him in his decision making process. It’s never as simple as ‘yes’ and ‘no’.
It took us eight years to find out that the Central Remedial Clinic (CRC) in Dublin have a Night Positioning Clinic. Hard to understand that no one told us about this when positioning is one of the most important issues for someone who cannot move themselves.
It took a bit of time and effort. But last week, Pádraig had an appointment. For him, and us, it was amazing. The therapist was very experienced and really knew what they were doing.
The main concern is that his hips are positioned correctly and that last year’s issue will not return.
What amazed me most here is that all these issues and how to remediate them are well know and understood, but nobody shared their knowledge with us or offered help when Pádraig desperately needed that help. For example, it seemed that the therapist in the CRC was well aware of the procedure (percutaneous mysio fasciotomy) that helped Pádraig so much last year.
Earlier on in the week, Pádraig also had another appointment with his wheelchair clinic. The agreement now is that Pádraig is exceptionally tall and will need a wheelchair built for an exceptionally tall person. As this is not available ‘off the rail’, it will have to be built for him.
An obvious conclusion, really, just that it took a long time to reach.
Something else did not take a long time at all. And it shows how much difference a bit of initiative can make.
There is this really beautiful walk in Leitrim around a lake. The problem was that at the end you had to cross a little bridge, but you had to get up a few steps. It was a matter of getting a few strong hands and lifting Pádraig up those steps onto the bridge. One message and less than a week solved the problem.
This happened in what Pádraig used to call ‘the middle of nowhere’. Five stars!
This week’s lessons? Life is not binary. ‘Yes’ does not mean necessarily ‘yes’ and ‘no’ does not necessarily mean ‘no’. The best of care and the most attentive help might be available in the middle of nowhere where you might expect it the least.