Pádraig met a few old friends at an Irish language event organised by DCU library in St. Patrick’s College, the opening night of an exhibition celebrating the 100th anniversary of the birth of Cathal Ó Sandair, the most popular Irish-language writer ever. Róisín Adams was in conversation with Caoimhe Nic Lochlainn, Fiontar Scoil na Gaeilge, with Sadhbh Devlin, also Fiontar Scoil na Gaeilge, being the MC for the evening. It was another relatively small, but intimate and extremely friendly gathering where Pádraig really felt at home.
During the week, we had a few tough days, with a bad cold hitting us, except Pádraig. An Saol had a visit from the Irish Minister of Disability who had been invited by one of An Saol’s clients to come and see the place.
Anne Rabbitte was very impressed and extremely supportive of the Centre and the work of the An Saol Foundation. For her it was clear that the Centre’s work had to continue – and in its own permanent home.
Listening to what sounded like very common sense reminded me of where we have come from. Nearly 30 people are now attending the An Saol Centre and eight families are part of the An Saol Project that had been established for three to five families less than three years ago. We found and adapted a building, employed staff and are now delivering a service for people who up to then had been completely abandoned. We are delivering what expert government reports had been calling for for more than a decade. In the An Saol Centre, people again found hope that had been taken away from them.
Yes, of course, we can do even better. We need to improve on what we are doing, and we have to do more: create a better social space and add respite and living quarters for those who need them. (By the way – if you know someone who could part with a field in North Dublin for An Saol, please let me know.) And we can do with more help from like-minded people, from volunteer-drivers to collect clients who don’t have their own transport, to someone with a few hours a day to help us keep the place clean and tidy, to a Programme Coordinator to organise an efficient and effective service. A good send of humour is required for all positions.
Interested?
All the other stuff I hear from those who really haven’t smelled the coffee yet is just noise that I will take with a sense of humour. It will keep my common sense on the dance floor.
Use the time you have wisely. Also, be grateful for your life because that too will not last forever.
12 year-old Hamish O’Flaherty at his father’s funeral last week in Creeslough
You will all have heard about the terrible explosion in Creeslough, Co. Donegal, that killed ten people on Friday of last week.
This week, their funerals took place. A short speech made at the funeral of James O’Flaherty by his 12 year-old son Hamish, was probably one of the most moving. He said about his father that he had no shame: he wore a jacket with a huge paint stain on the side of it everywhere, in the shops, to the movies, or on the beach.
Having thanked everybody involved in the rescue efforts, he said that he liked to say something he had learnt in the past week or so.
We should be grateful. For your families, cherish them, be grateful for they won’t be there forever.
Use the time you have wisely. Also, be grateful for your life because that too will not last forever.
Be grateful, for you will be able to rest after your hard work.
You can see and listen to Hamish’ short speech here.
Yesterday was Harp Day, of Lá na Cruite. There were all sorts of Harp concerts going on. The best one must have been the free lunchtime event in the Casino at Marino, just a short distance away from us.
The Casino is one of the finest examples of 18th century Neo-classical architecture in Europe and was only recently re-opened to the public. For us, it was the first visit. And it was spectacular. Three excellent harpers, Ann Tuite, Mary Kelly and Leah O’Sullivan, entertained just over a dozen guests for an hour in one of the fine rooms of the Casino (=small house, from the Italian casa), the Blue Saloon. You can listen to an amateur recording of some of the pieces here.
There was this small issue of the 12 beautiful steps leading into the Casino. We managed that no problem with the help of other concert goers. Those were the days when I was afraid of pushing a wheelchair through narrow isles in a supermarket – never mind brining it up or down steps.
I was thinking: imagine, a 12 year-old boy who has just lost his father asking the mourners at his father’s funeral to be grateful.
If he can. So can we.
No matter how harshly we believe life has treated us.
One morning last week started with the most beautiful rainbow I had ever seen on our road. It wasn’t a case of apologising for an angry sky – it was a case of wiping away any anger that might have been there.
From the sky, from our minds.
And the day turned out as it had started. Beautiful.
A music technology lecturer working on his PhD came in to try out some of his ideas with Pádraig. He used switches from a Logitech Adaptive Gaming Kit – which costs a fraction of what the ‘medical’ switches cost. And he had created sound interfaces using a Microsoft Xbox kit.
Pádraig played some music using the Xbox pads. He then played music using the knee switch, changing the sound with a foot switch.
I thought it was absolutely brilliant. Judging by the expression on Pádraig’s face, he felt the same. We took some videos; with some more time, I’ll put them together and share them.
Another brilliant thing happened last week.
We had a Zoom call with the people who are planning a public awareness campaign for the Decision Support Service who will be helping with the implementation of the new Assisted Decision Making (Capacity) Act 2015 (sic!).
They would like Pádraig to help them and take part in the campaign. Pádraig was delighted with that. He was even happier when he heard that he will get a contract for his work and a fee.
Imagine. And think back a few years when decisions about Pádraig were not only made without consulting him, but also without our consultation. Some of them against our repeatedly expressed wishes. By doctors and nurses who had his ‘best interest’ in mind without even thinking of consulting him.
How life has changed.
No more angry skies – but beautiful rainbows, full of lively colours.
Perhaps all the dragons in our lives are princesses who are only waiting to see us act, just once, with beauty and courage. Perhaps everything that frightens us is, in its deepest essence, something helpless that wants our love.
Rainer Maria Rilke
The first time I heard a ‘milestone’ mentioned was not when I was on the road but in an office. I was introduced to a big project that was divided into milestones that had to be achieved on a certain date. The critical path was not a path at all but an indicator of the minimum time needed to complete the project.
I have no idea how long our project will take or when it will finish, if ever.
But I know that a massive critical milestone was achieved in the last two weeks when Pádraig opened his own new bank account.
We are no longer waiting for change. It is happening and Pádraig is driving it. A true trailblazer.
There were times when a bank had problems even sending statements out to Pádraig. When we had to go with him into the branch to ask the cashier for it.
Worse, there were times when the system-recommended default for him was a nursing home. Because, we were told, he could potentially have really bad seizures and other terrible episodes, it would be incredibly hard for us to look after him at home, and it would be, instead, in all of our best interests to spend quality time together every other weekend on a visit. One expert clinician turned marriage counsellor told us that most marriages crumbled under such pressure.
None of the above happened. To the contrary. Pádraig never had a seizure nor any other serious illness since he moved home. He is enjoying life, tasty food, travel, and good company. We have never been stronger as a family.
It is amazing to see that the 2015 (sic!) Assisted Decision Making (Capacity) Act, soon, and finally, to be commenced, has already commenced in society — who is way, way ahead of politics and legal road blocks.
Times have changed. We just have to act with beauty and courage. The dragons really are princesses. They just need a little love and tenderness.
When the rain is blowing in your face and the whole world is on your case I could offer you a warm embrace to make you feel my love
Bob Dylan, Make You Feel My Love
Pádraig had a good week, between getting back to the lunch time student concerts in St. Pat’s, some new active standing approaches, and a fitting of what looks like middle of the road blue jeans.
COVID stopped the concerts for more than two years and it was great for everybody to see a bit of what-used-to-be return. The students and lecturers in St. Pat’s were extremely helpful and accommodating, as ever.
Pádraig and the rest of us are getting a better hang of what is called ‘active standing’ – as if there was standing that wasn’t active. To be fair, what he is doing is standing with very limited support, especially if we get it right. No devices or artificial, man made, support involved. We try to include some exercises like swaying to the left and right, or bending and stretching the legs in turn as if walking. To be honest, to me it feels like one of the most rewarding activities. I can’t wait for the day when he (and us) will be ready to do some real walking across the room
I bought some clothes in RehaCare a week and a half ago that are made and sold by a small company in Berlin run by a very entrepreneurial wheelchair user. He couldn’t wear normal cut blue jeans comfortably and when he was trying to put a jacket on, it was always too long and in the way. So he designed and is now selling clothes that not only look fantastic but are nearly perfectly adapted to be worn by wheelchair users like himself. Today, Pádraig tried on some of the clothes I had bought and, luckily, I had picked the right sizes.
Yesterday morning, looking brilliant in the new trousers, we went into town and had a good Irish Breakfast in our ‘usual’, the upstairs restaurant in Dunnes Stores. You can pick what you want, it’s priced ok, and you can sit on a table with a bit of a view.
Sometimes, I get worried because these days life is nearly good, as good as it can be given what happened. There will be another crisis, outrageous situations, helplessness. But until then, I’ll join Pádraig enjoying every new day of our lives.
Dylan wrote and recorded 25 years ago this year what is one of the best love songs ever, covered by more than 450 artists. And for a change, he sings it. Nearly.
I’d go hungry, I’d go black and blue I’d go crawling down the avenue There’s nothing that I wouldn’t do To make you feel my love
When we share our love with those around us, life is good.
If you think this quote is correct than you display what’s called the Mandela Effect.
According to MedicalNewsToday, the Mandela effect is when a group of people misremembers a historical event or person. Writer and researcher Fiona Broome coined the term over a decade ago when she created a website detailing her recollections of former South African President Nelson Mandela dying in prison in the 1980s. Nelson Mandela did not die in prison in the 1980s. After serving 27 years in prison, Mandela became president of South Africa from 1994–1999. He died in 2013. Despite this, Broome thought she remembered international news coverage of Mandela’s death in the 1980s. She found other people who shared these false memories.
E.T. apparently never said E.T. Phone Home, but E.T. Home Phone. – So much for our collective memory.
I’ll get back to phone matters and memory.
First I need to say a huge, huge thank you to Marie and her family who went out of their way to organise their famous Coffee Morning for Caring for Pádraig. Except for the bad COVID years, this has been an annual event since Pádraig’s accident. It became the annual rally call for his support and a meeting point for all the different people who know about Pádraig’s accident.
For the first time since it started, this year the Coffee Morning was hit by really bad weather. But despite the constant downpour, there was a constant stream of people arriving, meeting up with their friends and buying everything from the most luxurious cakes that had been donated, to honey (as organic as the bees can make it) from a friend labelled Le gach dea ghui de Pádraig Schaler, with all the best from Pádraig Schaler, to raffle tickets in the hope of winning some of the fabulous hampers and other fantastic prizes prepared by Marie’s family.
It is because of the generosity of family, friends, and neighbours, that Pádraig was able to attend hospital and therapy services in Germany during the pandemic when his hip caused him very considerable pain, or the therapy services in a specialised Neurophysio clinic in the North of Spain this Easter.
We are so grateful to sll the hard work Marie and her entire family put into the preparation and running of the Coffee Morning in their house, and to everybody who came despite the torrential rain on the day. Pádraig will make good use of the donations made to continue to live his life with his injury.
This week I went to RehaCare in Düsseldorf, the world’s largest Rehab Fair. It too had been cancelled for the past two years and I was eager to see if there were any new supports Pádraig and those with similar injuries could use.
I wasn’t disappointed. Exhibitors showed off products I would not have found anywhere else.
Coming back to phone matters.
We had bought a mobile phone with big buttons for our elderly neighbour John. Sadly, he died recently. We decided to let Pádraig have a go on the phone. To our surprise, Pádraig not only was able to dial the numbers, but he straight away dialled mine – the first mobile phone number in the house. But he also remembered his number, and that of other family members.
Be honest – how many phone numbers do you remember?
For me, this was yet another example that many of Pádraig’s abilities are restricted because we do not provide him with the support he needs to do what we all do, like ringing their family and friends.
We discover what he can do by accident because we do not know what he can do.
Expect a phone call from Pádraig in the near future.
With the benefit of historical hindsight we can all see things which we would wish had been done differently or not at all.
Queen Elizabeth II on 18 May 2011, at a State dinner in Dublin Castle
You will have heard this quote a million times over the past 11 years, and especially over the past days, following the death of the 96-year old monarch last Thursday. She is being remembered by all political parties in Ireland as a great friend of Ireland and as a facilitator of the peace process.
It made me think and wonder. She was Queen when British soldiers shot and killed innocent people in the North of the country. Do we really need hindsight to recognise this as something we wish had not been done?
I read a brief summary of a Deutsche Welle radio programme today about women in the 70s who were afraid to speak up about unequal pay because they feared to loose their job.
That also made me think and wonder. It seems to be a constant in our society that people do not speak up because of fear to be severely sanctioned. Of fear to loose their job, or the support for their loved ones, or their family. And that fear is real. Primetime Investigates documented some of these real cases, which are, of course, just the tip of the iceberg.
The way back from Lourdes last Monday was a bit stressful. Someone, Ryanair or the travel agency, had decided, without even telling us, to move us from the seats we had purchased (2d, 2e, 2f), because they have extra legroom which Pádraig needs, to seats in the same row (2a, 2b, 2c), but without the extra legroom. Nobody managed to sort this out until we were on the plane and three very kind passengers agreed to move across the row. Pádraig got the extra leg room and had a good flight back home.
The new, big wheels on his chair have made a huge difference. The chair is now so much easier to push, even on bumpy footpaths, and for Pádraig it is so much more comfortable. It took months to get that done, nobody knows why.
To celebrate, we had a great Thai take-away in the sitting room with very different tastes to our own home cooking.
Pádraig also got a new neck and head support which can be adjusted by adding or extracting air. I tried it out myself and it really works very well. Pádraig put it on for his Lokomat sessions and is very happy with it.
There seems to be no end to the discovery of more efficient and supporting gadgets and ways of doing things in a better way. You just have to keep trying and pushing. Take responsibility.
A Uachtaráin agus a chairde
We do not need historical hindsight to know what is right and what is wrong. Using threats and fear and sanctions to get troublemakers into line is medieval and cannot be tolerated in a modern, inclusive, just, and democratic society.
In the words of Elizabeth, we can never forget those who have died or been injured, and their families. To all those who have suffered as a consequence of our troubled past, we should not just extend our sincere thoughts and deep sympathy, we must make sure that they are treated with dignity and respect and justice.
Anything else would be wrong, not just in historical hindsight, but today.
PLEASE JOIN US TODAY, SUNDAY 11 SEPTEMBER, 11:00 – 15:00
To give anything less than your best is to sacrifice the gift.
Steve Prefontaine
Please join Pádraig and his friends next Sunday, 11 September, 11am to 3pm, for what promises to be a great coffee morning
85 St Mobhi Road, D9, Marie Butler McNally
I had heard about those new runners and when a good friend told me about a website where they had been significantly reduced, I went for it.
When I tried them out one morning, I ran faster than I ever did in my life. I had to change from the bumpy footpath to the road trying to avoid potholes. I nearly got dizzy at my own speed and when I had finished the 5k I could just about breathe.
If Steve had had runners like this in the 1970s, his records would still stand.
The designers and engineers at the shoe factory certainly found the magic formula. They gave their best.
The morning after my magic run, I was too afraid to put the shoes on again and picked my ‘old’ runners instead. Surprisingly, the magic still worked and I did an 8k training run in my (admittedly very modest) competition time.
Meaning: if you know in your head that you can do it, you can. Or: if your mind is set for making it happen, you’ll succeed.
The gift is there. Discover and use it. Don’t sacrifice it. Give it your best. For yourself and for others.
I always forget something when I travel. The only question is when I will notice, how important the object I forgot is and whether it can be collected before leaving the house and the country, or whether it can be replace in whatever place I am going to.
Passport, money, ticket used to be the essentials. Now you definitely need your phone, a recharger, maybe an adaptor. And a dozen other things when travelling with Pádraig.
It’s not only about forgetting stuff at home, the security check at the airport is another blackspot. It’s easy to forget about an item if you put 20 on the belt. And if the stuff is inspected by people without much experience with hundreds of people surrounding them.
On Friday morning we took our first flight in a very long time. With Ryanair. To Lourdes.
It has been a journey full of memories.
It was the first place Pádraig travelled to after his accident. On a train over two days and a night, from the North of Germany.
Things are very different now. We went to see all the places from then and from the following years when we went to Lourdes, then in the company of so many helpful hands.
This weekend, we are with our parish in Lourdes, just for a few days. The Accueil is still closed and the large pilgrimage groups have not yet returned because of COVID.
It gave us the opportunity to get to know the town from a different perspective.
We visited Bernadette’s house, the mill she grew up in and the prison cell that served as their family home when the mill went bankrupt. We also saw the most elegant and one of the oldest hotels in town, build by Bernadette’s brother and designed by a famous architect from Paris, a far cry from the places of their youth.
Our own hotel is a typical hotel for large groups of pilgrims. I don’t think these hotels have changed much over the past decades. They have quirky little details people would no longer use – like the toilet paper holder that doubles as an ashtray.
We also went to must be one of the most beautiful places in Lourdes, a short bus ride away from the busy town: the Cité Saint-Pierre. High above, on a hill, overlooking their buildings is a small, stone-built chapel where we had one of the most uplifting and spiritual masses I had assisted in a long time.
Our day ended with the candlelight procession. The Ave Maria of Lourdes makes me cry, no chance of me joining in. I was going to say that I don’t know why, but I do know: it brings up too many memories and hopes and desperation, all at the same time, too many to handle in a candlelight procession with thousands of people.
Before we went for Lourdes, I helped Pádraig standing up, with some help, something I had not done in a long time (except when getting out of and into his chair), something I really enjoyed and promised myself to do regularly.
Pádraig is really giving his best. He certainly is not sacrificing any of his gifts. On the contrary, he uses his gifts to improve a little every day, to have some fun every day, to do something scary every day, and – to inspire so many others who with him find purpose in their lives.
Dozens of people found purpose and hope in An Saol, life and living with a brain injury. And it is him who inspired the establishment of the centre, came up with the name and the logo, represents its culture and purpose. Without him An Saol would not be. I don’t think there is anybody else in Ireland who could say that of themselves.
if you know in your head that you can do it, you can.
If your mind is set for making it happen, it’ll happen.
Because you will give nothing less but your best and never sacrifice that gift.
Please join Pádraig and his friends next Sunday, 11 September, 11am to 3pm, for what promises to be a great coffee morning!
I love meeting new people; I think everyone has a story to tell. We should all listen sometimes.
Kim Smith
It’s all of that and so much more. The best coffee morning is back this year after two years of kind of a forced absence. There will be fabulous food in fabulous surroundings in the company of the nicest people you could meet. Old and new friends. Everybody is welcome to join.
Thanks to our good friend Marie and her family, we will get together again this years to enjoy what has always been, for so many years, the most beautiful morning, and all in support of Pádraig. Without this support Pádraig would not have been able to get medical treatment and rehabilitation when he most badly needed it. It is with the support of his friends that he will be able to continue getting this treatment and doing things that allow him to live his life with his injury.
Yesterday was one of these beautiful late summer days that are even better when you can spend some time at the sea front.
So we went for a walk.
And when we were about to pass by the Clontarf Baths, a seawater open air outside swimming pool with a beautiful restaurant and views of the sea, the Liffey and town, we decided to take a break and have a drink.
We spent about an hour there enjoying the early afternoon, watching out to the bay and chatting away. Sometimes, the best moments come when you don’t expect them.
And then I got a phone call from a very good friend who invited me to what turned out to be a visit to another world. Within a couple of hours it felt like as if I had been beamed across the ocean to Nebraska.
I have no idea why, but last evening, the Nebraska Cornhuskers were playing the Northwestern Wild Cats in the Aviva Stadium in Dublin, Ireland. It was out of this world.
It was only my second time to be at an American Football game (the first one had been a small college game in Tennessee), so I decided to look up the basics of the game to be able to follow it at least a bit.
Two teams of 11 players are trying to get the ball across the line of the opposing team. The game is two half of 30 minutes long, or four quarters of 15 minutes – and takes, on average, three hours… which is when I started to get lost.
If didn’t get better during the match. I never managed to even get a feel for what was happening on the pitch. Each of the team must have had 50 players, and although only 11 of them were playing on each side at any one time, they were constantly changing.
When people around us where jumping up for joy I was wondering what on earth just had happened?
The evening was great fun and a great cultural experience in the company of a really good friend.
We had time to chat. And, as happens so often, talking clarified things in my head I know but am not always so aware of. Doing it from a distance, outside of my ‘normal’ life and in a very different environment, also helped to see things in a slightly different light.
This day next week, we will be back in Lourdes for a long weekend with the parish. The usual, much larger Diocesan pilgrimage has not yet resumed after COVID. Pádraig will not be staying in the Accueil, but, instead, the three of us will be staying a few nights together in a hotel. We will experience this very unique place over just a few days instead of the usual week.
We are all looking forward to what will be in so many ways a very special journey.
We can do no great things; only small things with great love.
Mother Teresa
Over the year, Pádraig saved for a Gaeltacht fund. Last week, he invited us to go with him to Connemara. Just for a couple of nights. We went to Cheathrú Rua, Furbo, Ceardlann in Spiddal, and many other places where he had spent time with his friends.
It was a journey that opened my eyes and my heart. I had heard so much about these places when Pádraig came back from the West. But what Connemara really meant to him I never understood.
When we were walking down the Main Street in Cheathrú Rua, a young woman stopped to great us. She knew Pádraig and his sister and started chatting away about their common adventures in the Gaeltacht.
It was a small, short encounter with a big impact on me and my understanding of the importance of this place in his life.
Yesterday morning, I went for a 10 mile run in the park, together with a friend and a few thousand other people.
We took the picture on the podium before the race while we were still fresh and all worked up for the race to start. Power of Support.
Our lives are sometimes so busy that we get our priorities wrong. When Pádraig went to Connemara, my preoccupation was to get him to the bus in time, and collect him from the bus stop when he got back. That was important. But I should also have taken more time to understand what it meant for him to spend time there. When I started running about 10 years ago, I went for a good time. Now I run to clear the mind, and to stay healthy and fit.
I cannot do great things. But I can do small things, with great love.
Hospi-Tales 