Tall

Being tall and having long legs is all fun & games, until you get into a small car.

Anonymous

Pádraig had to learn the hard way following his accident that there are more serious issues than getting into a small car when you are very tall.

It is next to impossible to get a wheelchair for really tall people. Wheelchair engineers try their best with workarounds. Although, workarounds is not what you need for a chair you spent a lot of time in. For example, inserting an extra seating block to indirectly give more height for the footrests is ok for that purpose, but it also brings up the tipping point of the chair. The stability of the chair is not something you really want to play around with.

Orthopaedic issues also become more common and complicated if your long legs and arms provide more leverage for unwanted forces. We were reminded of the very serious problem Pádraig had in late 2019, when he could barely sleep because some involuntary movements of his left leg managed to push his femur out of his hip. When we brought him to our hospital’s A&E Department in January of 2020, they gave him an x-ray and referred him to an orthopaedic consultant. Many months later, Pádraig got an appointment for December of 2021 – an appointment that was just re-scheduled to April of next year, 2022. Had he not gone to Germany last summer to get this issue seen to, he would still be in agony – until April 2022 at least.

If you don’t understand how this is possible and allowed to happen: more than two years to get an appointment to see an orthopaedic consultant (or someone on his team) when you are in such acute pain that you cannot sleep, I am with you all the way.

This is beyond comprehension. There is no way that they even have the faintest about what they are doing, or rather not doing, to those who urgently and immediately need their help.

In good news.

Yesterday, Pádraig said, and not for the first time in the recent past, that he does not have any persistent pain and that he is in good spirits.

What is relatively new is that when we asked him what is the one thing that he misses most now is: not being able to stand by himself. Communication is also important, but he has made progress on that front. It’s standing tall that he misses most. Because, as he said : “When I stand, I feel alive.”

It could, of course, also be that he finds it hard to sit in a wheelchair that was obviously built for a smaller person than himself. We didn’t ask him.

Here is another quote about standing tall:

Stand for what is right. Even if it means standing alone. – Suzy Kassem

Eventually, one day, every valley shall be raised up, every mountain and hill made low; the rough ground shall become level, the rugged places a plain.

A very happy, peaceful and hopeful second Sunday of Advent.

Arrival

But now I’m not so sure I believe in beginnings and endings.

Dr Louise Banks in Arrival

Some say, Arrival is about self-discovery and the importance of love. Like many good stories, this one, Arrival, is different for different people. Much depends on where you’re coming from, your perspective.

For me, the movie is much more. It is about the discovery of a whole different, new perspective. Of time. Not linear as we know it. But circular. About the possibility that there mightn’t be a beginning nor an end.

If that was true, we should, like Peter Fonda with his Timex at the beginning of Easy Rider, throw away our watches. Measured linear time doesn’t matter. We’re not prisoners of materialism, schedules of traditional life and its time, we’re free of all those constraints, we’re not living in Little Boxes, we’re free spirits, Born to be Wild, agents of our destiny, when we’re On the Road, moving, travelling, living our dreams. There is no beginning and no end.

The only people for me are the mad ones, the ones who are mad to live, mad to talk, mad to be saved, desirous of everything at the same time, the ones who never yawn or say a commonplace thing, but burn, burn, burn like fabulous yellow roman candles exploding like spiders across the stars and in the middle you see the blue centerlight pop and everybody goes “Awww!” 


Advent comes around every year. The time when Christians prepare for the coming of Christ the Saviour. Every year. There is no beginning and no end.

Every year the hope is that the new year will be a better one. And there is always a ‘new’ year, every year. Light always follows dark.

I can see a better time
When all our dreams come true

What does that mean for our plans? Plans don’t work in circles. Will dreams only come true in a linear future, not somewhere in that circle?


Ryan Tubridy said on Friday’s Late Late Toy Show that one cannot understand the Show unless you’re Irish or have been living in Ireland for some time. I don’t agree. What about people who don’t think that the promotion of an abundance of (more or less) throw-away toys and show performances by kids dressed and acting like adults, with the occasional awe-inspiring pop or sports star thrown in is fun? Never mind appropriate when beginning to prepare for Christmas?

We watched the Show with Pádraig yesterday and made a bit of an event of it. It was nice to sit together with nice food, around an open fire. What was going on in that Studio we watched on our screen felt like as if it was happening on a different planet.

Do I sound old saying that for me, Advent, “Coming” or Arrival, is a spiritual, not a commercial time of the year?

What I felt yesterday was the incredible privilege of being in each other’s company.

There will be an end to the darkness. There is no beginning and no end to our love.

Hopes and Dreams

Bla Bla Bla

Greta Thunberg

I cannot recall another speech that became famous because it continuously repeated the words “bla bla bla“.

Greta Thunberg’s address to the Youth4Climate event in Milan at the end of September didn’t go down very well. Many people criticised her for an “embarrassing” speech, for doing exactly what she accused world leaders of, for giving out without proposing meaningful alternatives.

I think she wanted to say that world leaders for at least the past 30 decades promised to do something about climate change but they really didn’t. They talked and talked and talked, they published reports and papers non-stop, they organised a lot of conferences – but they didn’t implement the radical changes that are needed to save our planet.

Would she have at least a point here?

Have you ever come across politicians who plan and promise but don’t deliver?

Pádraig had an appointment with Billy, his dentist, last week. Turned out Billy had left the practice. Caroline, a new dentist in the same practice, was so kind to do a check up on Pádraig’s teeth. She was very happy to see how well he had been looking after his teeth. Everything was in order. He left with two samples of tooth paste after just few minutes.

Before we found this practice last year where Billy fixed Pádraig’s teeth when he had a toothache, we tried all we could to get him an appointment in the dental hospital which is where you would usually go with a wheelchair. More than a year later, he hasn’t even got an acknowledgment of his request, never mind an appointment.

He did, however, recently get the appointment to see an orthopaedic consultant, an appointment we had asked for in spring of last year. This was to address his terrible hip pain that had prevented him from having a proper night of sleep. A problem that was solved in the summer of last year with a relatively simple procedure lasting less than 30 minutes in a specialised neuro orthopaedic clinic we found ourselves.

I understand an 18-year-old who feels that politicians are talking a lot but are not always delivering, who says that our hopes and dreams drown in their empty words and promises. And I don’t think that she needs to come up with solutions before she can make statements like these.

Even at my age, I feel deeply frustrated by systems that seem to have developed a dynamic of their own. As if nobody was responsible for them. As if they were so complex that they could not be changed even if we wanted to.

Do we really have to give up our hopes and dreams?

Are we really that helpless?

His-story

Be ready for when the time will come.

The previous day Pádraig had had a bath (in a mobile bath tub) for the first time in a long time. Now Pádraig and I were about to go on an early morning air ambulance flight to Hamburg to what we thought would be a few months of rehab. The hospital physio had come in at around 5am to get him ready for the journey. There were nurses and carers on the corridor to wish him well.

The journey turned out to be the easy part of the coming two years.

On the 11th day of the 11th month eight years ago, we moved most of our life to Germany. Just before Christmas that year, when families prepared to be reunited, to be together for this most important of family time of the year, we left half of the family behind.

While our personal tragedy was acknowledged, the health system with access to limited resources had to ensure that these resources were aimed at those with a good chance of a meaningful recovery, we were told just a few weeks later in a Hamburg radio studio by Ireland’s most senior neurologist on our first late night RTÉ radio interview.

I was not ready for when they time came. Nobody was. Not for what happened to Pádraig on route 6A in Brewster. Not for the nightmares that followed, the injustice and ignorance; the incredible support by his friends.

Pádraig stood on his own feet for a while in An Saol last week, with a little help from his therapists. He texted one of his friends what he’d like as a Christmas present from him: breakfast in the Shelbourne, no less. On another day last week he directed Donal’s clarinet using his breath. He told us using Morse Code that what he has most been missing during COVID is his friends.

On Saturday, he went for a walk along the seafront and tried out some of the wheelchair accessible exercise equipment installed there by the Corporation.

Clontarf Baths and their restaurant are close by.

Pádraig said he would like a Mojito (sin alcohol). And after all this exercise some scallops with pork belly and black pudding. Pádraig hadn’t tried to drink with a straw for quite some time.

He also hadn’t had scallops with pork belly and black pudding. To my knowledge. Ever.

On Saturday, he finished that mojito. No problem whatsoever drinking with a straw. I thought it must have been what was in that glass that provided the motivation.

Those scallops, pork belly, and the pudding also disappeared in no time.

Last week was one of the best for RTÉ television programming in a long time.

Primetime Investigates documented some of the horrendous effects of the Ward of Court system based on the 1971 lunacy act; The Missing Children told the story of the Tuam Mother and Baby home, some of its survivors and asked who the 796 babies were whose bodies were found in a sewage tank on the site; and Father of the Cyborgs looked at the life and career of Limerick born Dr Phil Kennedy who made global headlines in the late 1990s for implanting electrodes into the brain of a locked-in patient and then teaching him how to control a computer cursor with his mind.

Here is a slight variation on the theme, a quote by Henry Clay:

The time will come when winter will ask you what you were doing all summer.

Life and Living. In a meaningful, caring, social way.

If we do that, we’ll be ready for when the time comes. And we have an answer to the winter’s question.

As Time Flies By

I like writing. I never thought about who was going to read what I write, never thought about what readers, if there were any, would be thinking about me, us or our situation. Until someone told me I should.

I am writing this blog because I want to record Pádraig’s journey, my journey, and that of those around us. I want to share the good things that are happening in a place where much, on the face of it, is a terrible tragedy.

Now I’m asking myself: what about the other stuff? The insults added to the injury? The stuff that keeps me awake at night?

Last week flew by. It was over in a blink.

I want to understand time more than I do. Days, months, years. Linear. Some feel like an eternity, some like just a moment.

The content, happy man sitting on top of a mountain with his eyes closed in perfect balance. Or the man fighting windmills.

Is it ok to learn how to live with what you’ve got or should you strive for change?

Can we choose how we live and which decision we’re taking?

There is a lot going on I cannot explain or control. I cannot control how I perceive time. I cannot ignore injustice and misery. Rather than sitting content on top of the mountain, I want to shout out loud from the top of that mountain that I’ve had enough.

Would it make a difference?

Or would people just shake their heads and think when will he ever learn?

This is the dawning of the Age of Aquarius.

And it, we will make a difference. Even, or maybe because, there’s so much beyond our comprehension.

Sunshine

If you spend your whole life waiting for the storm, you’ll never enjoy the sunshine.

Morris West

We did enjoy the sunshine last week. Earlier in the week on the endless beaches of the Northwest. On our walk through Hamburg and lunch at Daniel Wischer, our favourite Hamburg Fish-Restaurant.

While we were walking through Hamburg we came across what the Germans call Stolpersteine. These are brass, golden-coloured street stones remembering the individuals and families who were deported and taken from their homes by the generation before mine, many of them never to be seen again.

At the time, many Germans believed that this was the right thing to do. The ‘others’ had to go, they had to be removed from society. They didn’t fit. Today, we remember them.

There are days when I feel tired and exhausted, physically and mentally. When I feel a humility in the face of tragedy of a scale and a closeness that I never realised existed.

I spent some time with an old friend of mine from across the big pond. We shared many thoughts and opinions about the world, about people, about love and about pain. Although I had not met my friend for more than a decade we connected almost immediately. Time disappeared. Pressure and stress disappeared for a while. We were immersed in deep, meaningful conversation. Whatever surrounded us lost its importance. I am sure that these deeply moving conversations will stay with me for a long time. Until we meet again.

There are also moments when the obvious really hits me in the face. That life is about living and that life is changing all the time. That we have to stay connected with the world around us. That we have to keep our sense of wonder, of curiosity.

There can be small changes with a big impact. Last week, for the first time, I saw an electric car recharging filling station.

A filling station with electricity ‘pumps’ rather than the old fashioned gas/petrol pumps. I nearly missed the new ‘pumps’. They didn’t stand out and didn’t look that different. But imagine the massive impact they have. The world is changing and if we don’t go out, if we don’t keep our eyes and minds open, we’ll miss them.

Life and Living is us. All of us. Together. Mostly it’s fun and enjoyable, but it can be hard and nearly unbearable. Whether it’s the fresh air on the beach, the food we eat, the changes we make in an attempt to make the world a better place, or the terrible things we have to live with and can now only remember, never forget.

Last week I enjoyed the sunshine and I know Pádraig did too. There is a chance for this to change, for the next storm to begin. One day. We don’t worry about that today.

October Uprising

There are decades where nothing happens; and there are weeks where decades happen.

Vladimir Lenin

It wasn’t quite a revolution but definitely an uprising. A week when Pádraig was so busy that it was hard to keep up.

First, he went back to his favourite place in the house. The sofa from where he used to play online-poker with a friend on the big screen (when we were out) and from where he watched his favourite movies. To get him back on this sofa is one of these things that is so obvious that it’s hard to understand why it took the visit of two German friends and their common sense “therapy” approach to get Pádraig back to that spot in the house for the first time in many many years.

He chilled out completely and had a great time back in his old place.

Next in line was the birthday party of one of his carers. She invited Pádraig and one of her colleagues out to a restaurant for a mega birthday dinner where they apparently had a tremendous time. Going out to celebrate a birthday is the most normal thing to do.

It was so good to see that they all had a brilliant time.

Earlier in the week, Pádraig had spent some time working on a birthday present. An amazing piece of art. One of a kind. A volunteer art teacher in An Saol lent a helping hand.

It’s the time of the year when people take an autumn break. For some it’s a whole week, for some it’s just a long weekend. Pádraig headed off to the auld fatherland with most of his family.

First impressions were, let’s say, borderline.

German efficiency is not what it used to be. The ground handling crew at Hamburg airport took about an hour to locate Pádraig’s wheelchair and to deliver it to the plane – although they knew from the time that we had checked-in in Dublin that Pádraig and his wheelchair were on the way. The details of the story would have been hilarious had we not had to get up just after 3am in the morning to catch the early flight to the Hansestadt.

Needless to say that the plane’s Captain wasn’t amused while the rest of the crew tried their very best to keep our spirits up.

It didn’t help that the weather on arrival was typical for this time of the year: torrential rain driven by very strong winds against everything that stood in its way. But then the clouds parted and the evening sun guided us up North.

Husum celebrated the Octoberfest.

Really?

You couldn’t be much further up North in Germany than the city made famous by Theodor Storm. You couldn’t imagine the people up here wearing Lederhosen and Dirndl.

And to be fair, they didn’t.

The festivities turned out to be a very mini version of the annual Hafenfest, with some stalls on the old market.

We had our own Octoberfest. Pádraig’s October Uprising. He went shopping, took a tour of the harbour, and had lunch beside the water with us.

He finished off a very busy week that had been full of events that could have taken months or years. Or might never have happened at all because they were not supposed to.

Does it really take an Uprising for Pádraig to lie on the couch, paint a picture, go out for a birthday dinner without us, go on a plane journey in the middle of the night, spend a long weekend away – all in one week?

Think about it.

Here is another Lenin quote: Sometimes – history needs a push. An Uprising.

In my eyes, Pádraig is that push. He is the peaceful but very determined Uprising.

Miracles

The blind receive sight, the lame walk, those who have leprosy are cured, the deaf hear, the dead are raised.

Most people would probably be careful to say that miracles don’t exist. They would be even more careful saying that they believe in miracles.

I do. It depends on how you define as a miracle. Although, some believe that in the beginning there was the word, we often use words rather loosely, allowing the same word to represent slightly different concepts. What is fast to me, could be slow to you. What is progress to me, might be stationary to you. Is the man sitting on the mountain meditating poor and the guy with the yacht and the private plane and the villa rich?

The Oxford Dictionary defines a miracle as “an extraordinary and welcome event that is not explicable by natural or scientific laws and is therefore attributed to a divine agency” or as “a remarkable event or development that brings very welcome consequences”.

If you’ve read this far you’re probably wondering less about “miracles” but about why on earth I am going on about them?

Last week, we had two extraordinary people over from my “Heimat”. Two therapists with decades of training and experience and a lifetime of humanity. Over a day and a half they saw most of the clients coming to An Saol, spending about an hour with each of them.

They supported people standing up who had not stood up in years. They walked up the stairs with a client who hadn’t even thought anymore of being able to do it. They encouraged another to make a banana milkshake who he then proudly shared with myself. Others walked again for the first time in a long long, time. All normal things. All very special for the people in An Saol.

Above all they created an atmosphere of positivity, hope, can do, energy, and ‘everything is possible’. They brought humour, laughter and at times a sense of “is this real?” to the place. Misery, pity, and desperation were nowhere to be felt.

And this attitude was contagious. The place was buzzing.

So yes. Miracles do exist. Things can change. The blind receive sight, the lame walk, those who have leprosy are cured, the deaf hear, the dead are raised. Anything is possible.

A Walk in the Park

The most important thing is to try and enjoy life because you never know when it will be gone. If you wake up in the morning and have a choice between doing the laundry and taking a walk in the park, go for the walk. You’d hate to die and realize you had spent your last day doing the laundry.

Joyce Tenneson

Everybody enjoying life.

No further comment needed.

It’s one of those pictures that speak a million words.

It was a test run. Getting Pádraig and the wheelchair into the car, driving it up to the park, going out for a walk. With Pádraig standing up. Sounds straight forward. But it ain’t. Until you’ve done it. Next time Pádraig will not be the only person the An Saol therapists will take out for a walk. Now that they know how it can be done it’ll be a group excursion.

I wasn’t sure whether I was going to say this, but: I felt left behind. I didn’t take that picture and I wasn’t even in the park. I sat upstairs in the office, checking bills, accounts, and reports. I wasn’t needed. Didn’t feel that good for me. But it felt brilliant for Pádraig to have experienced just a little more independence.

How do I know?

Because he said so when he came back.

-…  (B)  .-.  (R)  ..  (I)  .-..  (L)

In morse code.

What more would you be asking for?

Well, I asked for a walk down 40 years of memory in 16th century renaissance live surroundings.

This weekend it happened. It was like a dream, but it was real.

It was pure bliss and happiness.

1,001 Ways to Communicate

“If the path before you is clear, you’re probably on someone else’s.” 
Joseph Campbell

I talk so I communicate. True but incomplete. Most experts agree that between 70% and 93% of all communication is non-verbal. Last week, Donal came over from Galway and did one of the most amazing thing I ever experienced. Using a microphone with Pádraig and a headphone connected to that microphone for himself (and us), he let Pádraig lead the music with his breath.

Listen to it here.

What you heard was a short example of an hour long session, with Pádraig and other An Saol clients.

Several people played different instruments using whatever abilities they had.

Pádraig continued practising morse code. He is way ahead of everybody else, remembering the codes using mnemonics a good friend of his prepared.

It was an amazing first when he used that code to spell out the name of his favourite group and the song he wanted to listen to. You can guess the name of the group and the song (or click here to listen to it).

We are used to us and others functioning in a certain way but there are 1,001 other ways to do the same thing differently. To function in a different way.

Sometimes that ‘thing’ has to be done in a way that we are not used to.

Sometimes we have to be really creative and inventive. Take risks. Go where nobody has gone before.

Explore. Find your way. Support others to find theirs.

You might chance the world.