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.

E.T. Phone Home

E.T.

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.

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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.

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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.

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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.

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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

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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

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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.

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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.

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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.

Summertime is always the best of what might be.

Charles Bowden

The world is full of surprises and opportunities.

Last week started with day two of Pádraig’s friends’ wedding celebrations. It was another fabulous day of Ireland’s week-long summer. The couple had organised a section of a boat on the Liffey which presented itself in glorious sunshine. The pints looked like straight from a Guinness add. The famous two red & white chimneys of the pigeon house in the background matched those on Pádraig’s sweatshirt. Many of the dreamboaters were around. A perfect day.

One of our friends was leaving after her summer holidays last week, so I decided to go for it and order that “Iced Caramel Almond Latte”. It looked so tempting and I just wanted to really enjoy the last moments in the company of our friend. – I’ll show you in a minute what it looked like in reality. You’ll know what I am talking about if you remember the scene in “Falling Down” when William ‘D-Fens’ Foster complains to Rick and Sheila about the Whammyburger he had just been served.

Pádraig had some really outstanding sessions in An Saol. Not that this was in any way unusual, but these were special.

An Saol got a ‘Swedish ladder’ which was used by one of the therapists to do some upper body strengthening exercises with Pádraig. To our surprise, he managed to hold on to the rings (with just a little help) and pull himself up from a half lying position to sitting. When I looked a bit closer, I was amazed by the muscles in his upper arms. Maybe, I should just stop to be surprised. Maybe, Pádraig just needs to be given the opportunity to show what he is capable of every day, with new challenges, creativity and ambition. Hut ab!

Also ‘Hut ab’ to the therapists who go out of their way to make things work, who use their imagination and creativity, who even bring in additional pieces of equipment to make things work a bit better.

An Saol also have a new music therapist attending regularly. Last week, he and Pádraig demonstrated the importance and fun of music therapy. Having practiced a few foot tappings, and mouth movements focusing on shapes you’d use with vocals, the therapist played a song – and I was wondering why he had picked ‘Let it be’ – a beautiful song, but probably not exactly one of Pádraig’s favourites. When he encouraged Pádraig to do a really good ‘Let it bEEEE’, I realised where this was going. When he changed to ‘Let it bAAA’ and ‘Let it bOOO’, Pádraig really made a big effort to play, and sing, along. It was fun and motivating.

We tried out the Johnstone splint – it’s like a plastic tube rapped around a limb that can be inflated and supports a big stretch. We had never heard of this until this summer when it was used by a German OT. Something very simple and very effective.

One early evening, we were sitting in the garden. We heard a bit of a rumble and when the dust had settled, we realised that a section of our garden wall had collapsed. Out of the blue. Nobody was injured.

From time to time, walls collapse in a storm. We think our wall probably collapsed because of the exceptionally warm and dry weather. It’s a mud wall that needs some moisture. Over the last week, it slowly was reduced to dust to a point when it just couldn’t sustain itself anymore.

At times, you have to imagine what it could be and hope and work and pray that one day it will.

In the meantime, I might sometimes feel like William ‘D-Fens’ Foster. But I’m not ‘Falling Down’. And won’t for some time to come:)

Summertime is the best of what might be.

Life should not be a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside in a cloud of smoke, thoroughly used up, totally worn out, and loudly proclaiming, “WOW! What a ride!”

Hunter S. Thompson

And you don’t have to be Hunter, or a surfer, to thoroughly enjoy life.

But a picture I took in Garding last week shows that life can also turn out differently.

It’s from a watchmaker’s window, showing the price of some pure zink plates he must have been trying to sell for a long time. Their original price was 35 euro, then reduced to 30, later to 20. Now, he’d take ten euro. Still, nobody seems to be interested in buying them. The shop is now open for only two hours on just two days a week. Soon, it’ll be closed forever and the formerly valuable pure zink plates will be thrown away by whoever will clear out the shop.

I went on my last, long early morning run in Eiderstedt last week, up the road to the dike and then along the shore towards the Westerhever lighthouse. Wild Geese were accompanying me, the sun was coming up on the horizon behind the windmills, the beauty of the morning was hard to beat.

Before we left, we all went back to the Arche Noah for a farewell. We had some amazing views: steps down from the bridge to the beach that looked like as if they were bringing people down to an underworld; and a family combining their forces to push a pram through the sand.

The next few days we spent on the road. And on ferries.

This time, we found a really nice steward who took us up the crew lift, through the kitchen and up to the Sky Lounge with amazing views out to the sea. It’s surprising that there isn’t a passenger lift going up. Last time, on the way out, Pádraig hadn’t been able to get up there. – We went to a different restaurant on the ferry and had a fantastic night with brilliant food.

We were also lucky with Stena Line on the last leg of the journey. They have really spacious wheelchair cabins with great bathrooms and access. Much better than the newer vessels of the competition.

The last few weeks were exhausting, at times stressful, challenging. We spent all this time together. Our day was not planned and pre-scheduled. The days were great and we appreciated every minute of that time together and away.

We came back for the wedding of two of Pádraig’s best friends. Most of his friends from college were there to witness and celebrate the official start of their lives together, on their own feet, with their own responsibilities.

The wedding couple had made every possible effort to make it easy for Pádraig to join them on their special day. They had made room for him in the church and discussed with the hotel about his room and place at the dinner. Pádraig really enjoyed the day and was smiling listening to some of the anecdotes he recognised, scenes from the couples’ life he had shared with them.

Days like these are so happy and so sad. For so many different reasons. No need to mention them here, we all know what they are.

All part of life.

Life should not be a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside in a cloud of smoke, thoroughly used up, totally worn out, and loudly proclaiming, “WOW! What a ride!”

Our battered suitcases were piled on the sidewalk again;
we had longer ways to go.
But no matter, the road is life.

Jack Kerouac

More walks under an endless sky that blows your mind away.

More visits to Garding, more live music, Bratwurst and Schnitzel.

More exercise lifting weights while standing, and moving legs as if walking.

Soon, we will have to pack our suitcases again and we will be back on the road.

But no matter.

The road is life.

We have longer ways to go.

Do just once what others say you can’t do, and you will never pay attention to their limitations again.

James Cook

Another, very normal, week off: breakfast in the garden, a stout in Egan’s Irish Pub, and dinner at the sea front with the seagulls watching.

An overnight in Hamburg where late afternoon was considerably warmer than Tating, even Madrid, or Scottsdale, Arizona, in the morning. The place where we stayed was, thankfully, super cool in many different ways. Except breakfast, which was very German and predictable, and set us up for a great day in a city full of memories.

OT sessions. With the OT in their practice using a ‘blow-up’ splint we saw for the first time. It gently stretched out Pádraig’s left arm as he was moving it, guided by the OT, from left to right and back, then up towards his head, holding it there for ten, and bringing it back down. Also movement we had not seen before with his arm stretched out.

Exercises at home. Lying on his front for a while, stretching his legs, lifting up his knees from the splint. Standing, stretching, and cycling the MOTOmed.

An afternoon with Eiderstedt’s Ringreiter. Some see this as the modern day variation of a medieval competition. Riders, at speed, have to stick the tip of their lance through a small metal ring that is fixed on a line across the parcourt.

And then, there are my early morning ‘runs’ along the dike. Complete emptiness, apart from wild geese, sleepy sheep, and the wind.

We are having a busy, tiring, fantastically intense time together, with very little routine and only the occasional reminder of our other life. Freedom to do what we wish.

Normal holidays.

There are many things others don’t expect those with a severe Acquired Brain Injury to do. But when you, even once, have done what others say you cannot do, you will never pay attention to their limitations again.

James Cook was right.