Gazillion

The world is made up by gazillions of details. No matter what world you’re living in. And when I listen to someone beginning to talk about the details I get this feeling that nothing will ever get done. I might have mentioned what a very good friend of mine once said: If you really want to stop something, don’t oppose it. Add to it enthusiastically. Add detail. Soon the whole thing will become unmanageable and it will be abandoned.

Reality does not conform to detailed plans. Checking on detailed compliance soon becomes an exercise “per se” without any meaning, incapable of dealing with variety of life, impossible to cater for variance and ‘exceptions’.

When I was still a student, I got a job teaching German to immigrants. Easy. I thought. Nothing more straight forward than teaching something you know doing (speaking) pretty well. Wrong. It was the most difficult job ever. Because I was trying to teach German the way I had learned languages, I was trying to teach rules (with dozens of exceptions) to people who had never learned a foreign language, and couldn’t care less about grammar, the minute details of gender, articles, and cases. Their needs were different from what I was teaching. Sounds obvious now but when I was doing it, it took me months to learn from my students about their needs.

Change gets lost in details. It comes in big strokes. Martin Luther’s dream was about the big issue. Revolutions are about big ideas, they drown and get lost in day-to-day bureaucracy.

I am not feeling at ease drawing up dozens of procedures based on existing practices for the An Saol Project day centre that is going to change the way we support persons with a very severe brain injury. Because if they are based on what exists, they will not bring change.

Rome was not build in a day. Slavery was not abandoned with the stroke of a pen. Equality will not be achieved overnight. We will need what the Germans call a ‘long breadth’. Persistence.

“We will never give up” is easier said than done. Enthusiasm and ‘long breadth’ are at times difficult to combine. But – if it was easy, someone would have done it.

I’m having a cold, having started to run again a bit and having started to go swimming a little. Hopefully, that I’ll get over that as quickly as I’ll be dealing with the gazillions of details of procedures and planning and fire regulation and disabled access and health and safety and infection control and minimum door widths and maximum distances. So I’ll have more time to spend with Pádraig.

Respect for Autonomy

The wound left by the PEG has been healing really well. It will leave a trace and a reminder of it on his stomach, but it will fade away. Together with the memories of constant pre-digested drip feeding, eliminating the very sensation of hunger and thirst, shrinking the stomach and eliminating all pleasures associated with food.

Yesterday, a father who attempted to murder his four children was jailed for eight years. According to the Irish Independent,

The judge said among the aggravating factors was the “narcissistic element” of the offences where the man had shown a “complete lack of respect for the children’s autonomy”, believing they would be better off dead.

A nurse in an Irish hospital, when we were standing beside Pádraig, had asked how the accident had happened and then said that it might have been better had he died. Knowing, had she thought about it, that Pádraig could hear her and that we had been fighting together for his life for more than two years.

Compare.

Speed

This book turned up called “Patrick wirbeleit – viele wie dich gibt es nicht”. It’s a book Pádraig got when he was maybe eight years old. He didn’t get it because at the time we thought it was a particularly great or exceptionally interesting book, but because of its name. You must have guessed it!

It’s hard to find a book with your name in the title – even if it is still a mystery to me what “wirbeleit” means. The subtitle, in contrast, is really nice: “there aren’t many like you”. No truer words said. We knew that then and, in a much more profound way, we know that today.

What I didn’t know then is how important the idea of him being in this boat was going to be to him and to myself. Maybe that’s where the Dreamboat idea originated.

The book is full of pictures about Patrick exploring the world and discovering new and exciting aspects to it. One of the best pictures in my opinion is the one that says that “many snails are not faster than one”.

The idea behind this is plausible. Yet, this is a more abstract version of very many concrete situations I’m sure you have experienced many times in your life. And they provoke strong reactions when I experience them. Snails are going to take their time. No matter how many of them are aiming for the finishing line.

What this tells me is that more people getting involved is not always the solution to a problem. And: there are times when it might be better to take things slow and easy while staying focussed. Because they just take their time.

Gratitude

I went for a swim this morning. And as I was about to get dressed and thought that my bag was quite light, I noticed that I had forgotten to bring a towel. This afternoon as I was on the way to Pádraig’s swimming session, I noticed I had forgotten my togs. Lesson: I can always get worse.

If you let it.

The trick is to be strong enough in yourself to deal with adversary. To be strong enough not to allow it to destroy you.

But above all: we all know that there is always something to be grateful for. There is always some good. By contrast, bad stuff is always and only distracting. It leads to nothing.

(I managed to deal with the forgotten towel and even the forgotten togs! 🙂

Truth

When I started writing this blog almost five years ago, I never thought anybody would read it. Apart from Pádraig’s friends who wanted to know how he was getting on in Hamburg. So I wrote about what happened. I wrote how I felt. I wrote about people that crossed my way. Our way. There were few things I did not write about. And when I did not it was because I did not want to.

That has changed. I have become much more conscious, because I have been told on several occasions, that I have to respect the privacy of others, even, and especially, if they are professionals. I have been told not to rock any boats too much because that could make things difficult.

I don’t like writing with scissors in my head.

Yet, it seems that there are things that need to be said that cannot be said because they would do damage if they were to be said. Sounds complicated? It is. At least for me. When sharing my personal perspective on what is going on should be simple. Because that is what I do. I share my perspective. Not the truth.

Pádraig continues to do well. In physio this morning, he was on a floor matt lying on his back with his knees up in the air, pushing his pelvis really high up towards the ceiling. The thing is, and I will get back to this one day, that it is becoming clearer to me every day that while therapy is necessary, integration and participation and love shown and received is the key. After that, everything else falls into its place. – What do you think?

Scissors

Read a great article today, from the New Yorker:

Even more serious is the growing acceptance of the don’t-rock-the-boat response to those artists who do rock it, the growing agreement that censorship can be justified when certain interest groups, or genders, or faiths declare themselves affronted by a piece of work. Great art, or, let’s just say, more modestly, original art is never created in the safe middle ground, but always at the edge. Originality is dangerous. It challenges, questions, overturns assumptions, unsettles moral codes, disrespects sacred cows or other such entities. It can be shocking, or ugly, or, to use the catch-all term so beloved of the tabloid press, controversial. And if we believe in liberty, if we want the air we breathe to remain plentiful and breathable, this is the art whose right to exist we must not only defend, but celebrate. Art is not entertainment. At its very best, it’s a revolution.

I find it difficult at times to stay balanced.

Twist

This is a specialised shop for disability and rehabilitation equipment. It’s in the North of Germany and it serves an area where it can take engineers, specialised advisors, sales and support personnel two to three hours to get to their clients. – A bit like Ireland. Only that in Ireland I have never come across a shop like this. Because it is not just a shop but it has an exhibition area and several highly specialised workshops. If you check out the pictures below, you will see what they do in these workshops: they sew, they build prosthesis, they build and adapt seating, they design and adapt support systems, they even have ‘simple’ parts such as hundreds of wheels to fit any kind of wheelchair. It would be brilliant to have such a place in Ireland.

 

PEG

When we were making plans to evacuate from Cape Cod and to fly Pádraig home, the doctors advised us that it would be safer for Pádraig to get a PEG, a direct entry into his stomach to which a tube could be connected in order to provide him with nutrition and hydration. They said it would be safer for the journey than a tube through the nose.

(Note: the pictures above are not of Pádraig but from the web.)

He had the PEG for 15 months. However, in 2015 we gradually introduced Pádraig to drink and food. Since the summer of 2015 he took his food only orally. Since the beginning of this year he took his liquids and drinks only orally.

And today, his PEG was taken out.

It will take a few days to close and heal up. There will be a mark on his stomach that he once had a PEG but it will become a distant memory.

This is a very major step. One that few expected him ever to take.

Two other really important things happened today. Someone in the family got a preliminary date for a final operation that will move things in the right direction. And I had an almost one hour-long conversation with the Archbishop of Dublin about injuries to the brain, about Pádraig, and about efforts to help persons with sABI to recover. It was one of the best conversations in my life. Ever.

Grateful

It was pretty cold that day. In the morning I found out that one of my two friends who had come over from Germany didn’t have a white shirt to wear. As if there wasn’t anything else to do, I borrowed one from my father and brought it over to their B&B, together with a tie which he had not forgotten – he had just never worn one before. My sisters’ hats looked great – they and the rest of my family had been told that women wear hats on these special occasions. Which turned out not to be entirely true. The neighbour had taken a few days off to clean out his garage so that we could park my overloaded VW Beatle in it – the first time a car had been parked in that garage for years – as we were heading off to Spain for the year the next day.

Today must have been one of the warmest October days on record in Dublin. We sat out in the garden for a cup of coffee and a bit of carrot cake. After a meeting I had erroneously scheduled for today, we headed out to have dinner. Remembering that day 33 years ago. Remembering 33 years. Thinking: we very likely won’t be here in another 33 years. Settling for and toasting to the next ten.

I was so nervous back then that I never really enjoyed that day. Back then I didn’t think it was the ‘happiest day’ in my life.

Today, there is absolutely no doubt in my mind that it was not just one of the happiest days but also one of the luckiest day in my life. In many surprising and unforeseen ways.

When I look at the wedding pictures, those of us who are still alive are in the minority. Not just the older generation, but also my friend of the white shirt and tie, and my sister are no longer with us.

A reminder of how precious life is. And that it is up to us to live it to the full. And, even more importantly, that we need to help those who need our help most to live their life to the full.

I listened to Amazed today. I know, I know. It is terribly “schmalzig”.

I don’t know how you do what you do
I’m so in love with you
It just keeps getting better

There are days when it ‘just keeps getting better’ and there are days that are difficult. Today was a good day. For which I am truly grateful.