Consciousness defines our right to participation and rehabilitation
If you can spare some time this weekend, listen to Professor Joseph J Fins’ opening keynote of the An Saol Summer School. It should be made compulsory viewing for all politicians, health professionals, and citizens interested in equality, integration, and participation. Those who say that there are injured who cannot be cared for because it is too expensive and because the outcome of any treatment is doubtful – whatever that means.
Covert Consciousness and the Right to Care: Bringing Disability Rights to the Clinic.
The An Saol Foundation’s 1st International Summer School took place last week. A packed programme of international speakers and days of hands-on review of and work with those attending the An Saol Centre provided the framework for hour-long conversations and discussions involving An Saol staff, international experts and families over six days.
Unfortunately, it did not find the resonance we had hoped for within the Irish health care sector, not within Irish politics. The office of the Minister for Disabilities did not even respond to the invitation to contribute.
While experts from abroad took more than a week of their precious holidays to support the work of the An Saol Foundation without any pay.
The Summer School closed yesterday with a Keynote by Prof Wissel, a German neurologist, with experts from Germany and Ireland exploring different aspects of care and rehabilitation.
The week demonstrated the commitment of the staff of An Saol and the support from international experts for the effort to make Life and Living with a severe Acquired Brain Injury possible.
It created an energy that will carry our work into the future.
Every country gets the circus it deserves. Spain gets bullfights. Italy gets the Catholic Church. America gets Hollywood.
Erica Jong
If you have ever been at a circus, there is a good chance that you were greeted by the ringmaster announcing: “Welcome to the biggest, most dangerous, amazing and spectacular show you have ever seen in your entire life!”
You might have quietly said to yourself, “I don’t have to go to a circus for that. My every-day life feels like that.”
That’s what I thought when I was asked whether I wanted to go to Circus Gerbola with Pádraig last week.
But I wasn’t prepared for what we experienced in that relatively small, a little bit miserable feeling, tent.
There were no tigers or elephants. They did not have exotic animals in cages.
But what they presented was breathtakingly spectacular. And we had the time of our lives.
Everybody gets the circus they deserve, to paraphrase Erica.
Gerbola was brilliant.
Exactly what what Pádraig deserves.
Tomorrow, Monday 9 May, at 13:00, Prof Joseph J. Fins, eminent author of the defining book on severe Acquired Brain Injury: Rights come to Mind, will open the 1st International Summer School on Life and Living with a sABI: Leave No One Behind, with a Keynote that will be well worth joining online.
You are also invited to join An Saol in Santry this coming Saturday, 10:00-13:00, in person for the closing session of the Summer School, followed by a light lunch.
Details on the week-long Summer School and for free registration go to http://www.ansaol.ie
It is not too late to join this year’s #IronMonth Challenge. Cover the distances of the world-famous IronMan over the month of May. For details go to http://www.iron-month.com.
If you’ve had your breakfast, just started to browse the web, and are reading this – it’s most likely too later for you to join in the fun.
Today, with registration starting at 07:45 am, we’re joining the kick-off event for the #IronMonth and sim, cycle, and run something akin to a super sprint triathlon – not in a competitive way, but in a way that even a complete novice can do at least part of the distances set on the various courses – all around Sports Campus Ireland.
When we went out last night to set up the signs it was lashing. I think that the rain will just add to the fun. Can’t wait to get started.
This day a week ago, Pádraig and I went to see Ed Sheehan, together with 82,000 enthusiastic fans.
The night was fabulous. While I don’t think that either of us are dedicated Ed Sheeran fans, I have never seen one man by himself entertaining 82,000 people just by himself. It was bordering on magic.
Please keep your fingers crossed for us – it would be nice if the rain held off for a few hours in the morning to allow for a good cycle and run.
Don’t forget to sign up for the #IronMonth and support the annual An Saol Foundation fundraiser! Go to https://iron-month.com for all the details.
I will not follow where the path may lead, but I will go where there is no path, and I will leave a trail. Branch Rickey
Who has ever heard of an IronMonth?
You probably have heard of the Ironman, the world’s toughest Triathlon challenge which challenges participants to swim 3.8k, cycle 180k, and – now that you’ve warmed up – run the 42k of a full marathon.
That’s what the An Saol Foundation has decided to do as their annual fundraiser, but – with a little twist – to make it a fully inclusive community event: participants have the full month of May to finish the challenge. Those who want to start the IronMonth with a big fun event will get together next Sunday, 01 May, at the National Aquatic Centre (NAC) in Dublin for the first ever TRYathlon covering (1) a 500m swim, (2) a 20k cycle, and a 5k run/walk. This fun event will not be about getting a good time or being competitive, it’ll be about participating and doing your best to complete as much of the distances as you can and feel like. For the family and friends who want to join in the atmosphere, there will be a food station and some music.
We’re missing the sound of the sea in front of our window. The return sailing was significantly smoother than the rather rough way out. The drive home as boring as ever.
Back home, a few people said that they hoped we’d had a nice relaxing time.
We did. Though at home, Pádraig has five PAs who help him along – roles we took over. And it must be said that hotel/apartment beds are not of the right height and usually have pretty soft mattresses, neither of which is helpful.
But those were small, logistical challenges.
Being together, eating out, listening to the sea, going for long walks, dreaming – that was what the real relaxation experience. It was fabulous and can only be recommended.
Life has to be lived together. Happiness is only real when shared – remember Chris McCandless?
LNOB is the new movement.
See you next Sunday at the Sports Ireland Campus and the National Aquatic Centre!
Oh, I’m sailin’ away my own true love, I’m sailin’ away in the morning. Is there something I can send you from across the sea, from the place that I’ll be landing?
Bob Dylan
Spanish Boots of Spanish Leather is one of my favourite Dylan songs because of the tension between deep, committed love and the thirst freedom. Between not wanting to be away from your loved one and the wish to explore new exciting worlds. In the end, he settles for Spanish boots from Spanish leather.
There is an old shop close to Madrid’s Plaza Mayor that sells those boots. There were times I was in Madrid, even if I did not need new shoes, I got a pair. – Not this year. But going away to Spain’s Northwest, exploring, travelling, has been good too.
Weight bearing became a whole new meaning on the last day with Pádraig’s new friends in Torrelavega. They put up to 13 kilos on his wrists, his legs and in a vest around his upper body. This was soon becoming a full-blown CrossFit-type session, with a constant change between a variety of high-intensity functional movements, like pulling himself up a wall-mounted ladder.
In between, they asked him whether he was ok. They also said that your pain level, between one and ten, when doing serious exercise should be seven. Otherwise, it would either hurt too much (if higher than seven) or it would not have the desired effect (if lower than seven).
On our way back from Torrelavega to Santander we decided to take a short detour and visit the site of the Altamira caves. The original caves are no longer open to visitors but the museum with the reconstructed caves are a close second best.
The staff were extremely helpful, especially when it turned out that the lift the museum had to bring wheelchair users to the last stop, down into the reconstructed caves, was too small for Pádraig. It’s hard to believe that a modern museum of this stature does not have a lift that would accommodate a wheelchair, even if that wheelchair was slightly larger than the ‘norm’.
Overall, it was a very good, truly amazing experience – to see and experience (even if that ‘experience’ was slightly fake) the art our ancestors had created some 36,000 years ago.
On the last evening of our stay in Santander, we had a tapas dinner in our ‘regular’ where we met a really nice couple from Wales who had come over to Santander on Brittany Ferries’ flagship. No issues about the crossing, they said. Super smooth. If you check out the two ships, you’ll know why – even by just looking at the pictures. I think the Irish are literally getting a rough deal.
If you ever met people from Wales, you know that I had trouble understanding even half of what they were saying. But I didn’t have to. They were just so open, kind and caring, it was heartwarming. They were complete strangers when we met them and they could have been our best friends when they left.
On Friday morning, we shared a typical Euskal pastela, a basque cake, for breakfast while enjoying a magnificent view from the living room of the apartment we rented for our three nights in San Sebastián. After that, we went for a walk into town.
This city is one of the few I know where you will find people carrying their surfboards through town under their arms or on their bikes to the beach. Imagine, you wake up in the morning and decide – it’s a good day for surfing. You catch your board, walk to the beach, and enjoy the surf.
We tried to travel light when walking into town. The old part is full of wonderful little shops and spectacular tapa bars.
Dylan’s song has a side that took on a whole different meaning for me in the last few years.
Oh, how can, how can you ask me again It only brings me sorrow The same thing I want from you today I would want again tomorrow
There is really only one thing I want, a thing that is unlikely to happen, and that even Spanish boots will not compensate for.
What I can do is to take heed of the western wind and take heed of the stormy weather.
And keep exploring, remain curious, maintain a healthy sense of humour, push the boundaries, and don’t let anybody convince me that life is a tragedy.
Join groups around the world – or set one up yourself wherever you live and let us know – who will complete the distances of the classic Ironman over the month of May.
If you are in Dublin (or close), join us on our first ever fun super sprint TRYathlon, suitable for all who want to try a short triathlon, supported by Triathlon Ireland and Irish Village Markets on the morning of 01 May 2022 on the grounds of Sports Ireland beside the National Aquatics Centre (NAC) – with food and fun for all the family. Sign up here.
If you were available to help out as a Cycle Marshal for the 20k ride – please get in touch.
Tell your family and friends about the event and share it widely using #IronMonth22.
Listen to Oliver Callan, standing in for Ryan Tubridy on Friday, 15 April, giving a big plug for the #IronMonth, @15:40 – or just listen to his IronMonth clip here. All thanks to a great friend of the An Saol Foundation!
Avoiding danger is no safer in the long run than outright exposure. Life is either a daring adventure or nothing. Helen Keller
The French ferry company had warned us that the 28-hour crossing from Rosslare to Bilbao on the Connemara was “économie”, no frills. Looking back, I think the ferry might have been built before the ingénieurs had invented stabilisers.
The car is still covered in sea salt left behind from the waves that came crushing across the open car deck. We were luckier with our “full Irish” than many other guests who lost their breakfast to unexpected and sudden moves of the Connemara.
I thought back to 1977 when I had travelled to Ireland for the first time, from Le Havre on the famous St. Patrick. That was de luxe in comparison. But even with the storm and seriously moving ship, or maybe because of it, this crossing was a super adventure. One of those you’ll never ever forget.
We got over it and are now enjoying the Spanish wild atlantic coast in Santander from the firmer grounds of the beautiful Sardinero beach and from the window of our hotel room at night. One week here and then a few days in San Sebastián before another crossing (but I won’t think about that for the moment:).
Our hotel is right beside Santander’s grand auld Casino. We haven’t been into the Casino (yet:), but have been down to the Sardinero to watch the dozens of surfers riding the waves. And we enjoyed the absolutely breathtaking sunrise over the sea.
Today, we went into town, on the bus. Nothing could have been easier. Much better than taking the car. We went for a walk, discovered Café Bar Dublin and had some tapas. Those alone would have been worth the journey. I have no idea what they do or how they do it. But there is a taste in those bites that is to die for.
Afterwards, Pádraig chilled out having a Coke on the Plaza de la Catedral in the early April sunshine, drinking from a straw and just being happy and content. Life is good.
We wondered: why would the small town of Torrelavega, about half an hour away from Santander, have a highly specialised neuro physiotherapy clinic? We were curious and followed the advice of a clinic in Santander who had told us that all neurological physio treatment was handled by this specialist clinic, Sinapse. So we went to check it out.
We were stunned. It was such a brilliant experience. Pádraig gave it 9 out of 10 and I couldn’t disagree with him. (Even if it’s perfect, it’s always good to leave a bit of room for improvement.)
We now know why the clinic is in Torrelavega – it’s because Cantabria’s physio university is also based there. The clinic is run by one of its professors, Dr. Carlos Rodriguez López.
The two therapists worked with Pádraig for two hours as if they had known him for a long time. They worked so hard, they were sweating. And they enjoyed it so much, you could see their happiness and satisfaction on their faces. They were so proud they asked me to share the pictures and videos I had taken of the session. It was fantastic and we’ll definitely be back there next week.
We didn’t have an idea of what to expect when we went on this trip. The first few days gave us a taste. They made as feel alive, making new experiences and discoveries every day.
“Man cannot discover new oceans unless he has the courage to lose sight of the shore”, André Gide once said. And Hans Christian Anderson was convinced that “to travel is to live”.
We all know that “a journey of a thousand miles must begin with a single step”. Let’s take that step together. One each day.
And we’ll have changed the world before we know it.
It usually takes me more than three weeks to prepare a good impromptu speech.
Mark Twain
A well prepared impromptu speech, an exact estimate, small crowds, the only choice, and something seriously funny – have in common that they are all oxymorons. We know what these phrases mean. Yet, they are contradictions in themselves. Something well prepared is not impromptu, an estimate isn’t exact, crowds aren’t small, a choice always offers options, and whatever is serious ain’t funny.
Music Technology is another oxymoron. Technology is tangible reality, music is creative and intangible imagination.
Yet, last week, a visitor to An Saol who teaches and researches Music Technology opened my eyes and my mind, and made me realise that sometimes things that seem to be opposites, can work together to produce radical change.
Pádraig (and others like him) are deprived (amongst other things) of a huge amount of sensory input. Worse: many clinicians working with severe brain injury don’t even realise this. Never mind realise the enormity of it.
Anybody with some common sense understands the difference between preparing, cooking, eating, and sharing food – and being fed some predigested nutrient liquid through a tube into the stomach. (As an aside: on one occasion a speech and language therapist and a dietitian made a combined effort to convince me of the opposite.)
But it’s more complicated than that. Because it is routine for us, we rarely realise what it means to be able to touch. Things and people. To transmit and understand information through touch.
Eminent scientists like Martin Grunwald have explained that we cannot survive without touch. Touching (haptics) is more important than seeing, hearing, smelling or tasting. Because through haptics we feel our body, our physical existence.
Now, what does it mean if I cannot move? Cannot touch soap and feel warm water on my hands when I wash them (because I cannot and others don’t do it with me); can’t feel the food that I am about to eat (because it’s injected into my stomach)? What does it mean if I spend most of my time on a special air mattress ‘floating in space’, designed to reduce ‘touch’? If I am ‘floating in space’ while being transferred in a hoist, instead of feeling my body’s weight on my feet while I transfer from bed into my chair?
On top of all this: what does it mean for my being, if I am deprived of all agency? If people perceive me of not being able to understand or communicate – so they take decisions for me without me; if I’m perceived to be ‘dead weight’, not being able to act on anything, do anything that would have any effect on anybody or anything?
It would be hard to find meaning in life.
Yet, this is what many people with a severe brain injury face.
Now imagine, what if there was …
a sensor that measured the position of your hand, and raising and lowering it would change the pitch of a note played by an instrument or the vibration rate of a cushion you’re sitting on?
a ring around your finger that converted tapping, bending and stretching movements into sound or a haptic effect?
a heart rate monitor that produced rhythms that can be not only heard but felt based on the beating of your heart?
a strap around your foot that produced the sound and vibrations of a bass drum in time with your foot-tapping?
And these are just some example of how music technology can help people with limited abilities to feel the effect of their actions on the world surrounding them – actions that anybody with a heart beat can control?
Remember the way how Pádraig controlled how a clarinet player plaid his instrument just using his breath?
Last week, Pádraig had a tiny visitor who really made him happy and smile – big time.
He got, after months of waiting, a new custom-made seat and back support for his wheelchair.
And I had some fun at the barber – who in COVID times decided to accept cash only, and in our National Car Testing Centre to get the annual NCT for Pádraig’s car – where they prepare for Brexit.
Although many people have tried, the world and its people cannot be understood. Even time, past, presence and future, are not what they used to be as Gumbrecht, who taught me literature in Bochum and recently retired from Stanford, explains quite eloquently, in German only unfortunately.
Crowds can be small, choices present one option only, fun can be serious, and music technology be creative – even creating meaning and purpose for those largely deprived of it.
And what looks impromptu is often quite well prepared, as Twain reminded us many years ago.
It is believed that the initial plan for killing all of the birds and replacing them with flying cameras was thought up one weekend in May of 1956.
Peter McIndoe, the 23-year-old creator of the viral Birds Aren’t Real movement
In January 2017, Mr. McIndoe traveled to Memphis to visit friends. Donald J. Trump had just been sworn in as president, and there was a women’s march downtown. Pro-Trump counterprotesters were also there. When Mr. McIndoe saw them, he ripped a poster off a wall, flipped it over and wrote three random words: “Birds Aren’t Real.” – As reported by Taylor Lorenz in the New York Times towards the end of last year.
That was the beginning of a movement.
According to Lorenz, in Pittsburgh, Memphis and Los Angeles, massive billboards recently popped up declaring, “Birds Aren’t Real.” On Instagram and TikTok, Birds Aren’t Real accounts have racked up hundreds of thousands of followers, and YouTube videos about it have gone viral. In November 2021, Birds Aren’t Real adherents protested outside Twitter’s headquarters in San Francisco to demand that the company change its bird logo.
The lesson: Fight lunacy with lunacy. Or, as Cameron Kasky, 21, says: the parody “makes you stop for a second and laugh. In a uniquely bleak time to come of age, it doesn’t hurt to have something to laugh about together.”
How to make the connection between Birds aren’t Real and St Patrick’s Day?
The thing is that Patrick’s Day is no longer just a day. It’s a whole week, with two, instead of the usual, one bank holiday. As a ‘thank you’ by the Government for all the great work that was done during the COVID-19 crisis.
We went out in search of a bit of ‘craic’ in Dublin’s Patrick’s Day Festival Quarter, the Collin’s Barracks.
The weather was fabulous and there were lots of people in the place. There was a group of really good dancers on the stage – Go Dance For Change -, two DJs were doing a night’s work in the middle of the day, and about two dozen food trucks sold burgers, waffles, and bratwurst dressed up as ‘hot dogs’.
The whole affair didn’t manage to create this “St. Patrick’s Day Feeling”. But it was good to be out and about and in a crowd of people again.
A walk along the boardwalk in town and sitting under our beautiful cherry blossom rounded up the week.
It mightn’t have been a real St. Patrick’s Day celebration we managed to join, but it was fun. The nice weather, the blue skies, the warmer temperatures, and the beautiful flowering trees certainly were real.
Having a bit of fun, being out and about again, brought a bit of relief to what are, for so many people, dreadful times.
Birds charge on power lines. Pigeons are liars. And the world is flat.
Think about it. And smile. I think Albert Camus would have liked this new movement.
The way I see it, if you want the rainbow, you gotta put up with the rain.
Dolly Parton
We saw this rainbow when we were driving home, up Drumcondra Road. And while I wouldn’t dream of correcting Dolly, this time it didn’t even rain. It was just beautiful.
The rainbow, its colours, variety, and beauty, has been used as a symbol by many, from ancient mythology to modern equal rights campaigns. Some look for the pot of gold at its end, a girl from Kansas just wanted to get over it and get to the place where trouble melts like lemon drops.
Pádraig went to this year’s first Patrick’s Day gig in St Patrick’s College in Drumcondra last week. It was a beautiful day and an absolutely brilliant lunch time concert. Nearly a dozen very accomplished traditional musicians played the most enchanting ballads and uplifting reels and jigs.
With Patrick’s Day coming closer, days are getting longer, trees begin to blossom, and the first flowers appear around the place.
I listened to someone talking about the idea of fractals. As Jack Challoner put it in the article he wrote for the BBC on fractals: “Unfortunately, there is no definition of fractals that is both simple and accurate.”
He quotes the genius who coined the word, the Polish mathematician Benoit Mandelbrot:
“Clouds are not spheres, mountains are not cones, coastlines are not circles, and bark is not smooth, nor does lightning travel in a straight line.”
Challoner concludes that the chaos and irregularity of the world – that Mandelbrot referred to as its roughness – is something to be celebrated. That it would be a shame if clouds really were spheres, and mountains cones.
My take on fractals is that what might on the surface appear to be simple, singular and well defined, is, in reality, often just a distant view of something that, at a closer look, is quite complex, multiple, and chaotic. Yet, there is system in the chaos. The multiple layers, the complexity, are made up of an endless number of similar-shaped objects: fractals.
A bit like the world and our lives: from a distance, the world looks blue and green, and the snow capped mountains white. There is harmony, we all have enough, and no one is in need. There are no bombs, no guns, and no disease.
Look closer and it becomes clear immediately that war, bombs and guns, hunger and disease, injustice and cruelty are all around us.
There are days when I’ve had enough of the complex, the chaos, and the irregularity. Of injustice, cruelty, wars and bombs. When I just cannot celebrate that roughness. When I need to see the world blue and green, and the snow capped mountains white. With people living in harmony.
When I want to enjoy the rainbow without the rain.
Those are the most beautiful moments in my life.
Being able to share them with the ones I love makes it all worth it.
