What have “You raise me up“, “Rock ‘n’ Roll Kids” and “The Voice” have in common? Well – they are all, what Germans would call, a little bit “schmalzig”, sweet, maybe a tad too sweet. The other thing they have in common is that they were (co-)written by Brendan Graham. And Brendan Graham is an all time friend of Colm Ó Meachair. Colm was a harp maker. He died five years ago, just 66 years old.

Colm built Pádraig’s sister’s harp. They say, it took Colm about a month to built a harp – which might be true if he had just been building one harp at a time. I remember, that it took many months and many visits to Colm’s workshop in Marlay House before the big day finally arrived. Colm’s harps were shipped all over the world and he was instrumental in the revival of the Irish Harp.

Tonight, Colm’s friends organised a concert to remember this incredibly talented and modest man in Marlay Park. The music was incredible and the concert featured many famous musicians and songwriters, one of whom was Brenda Graham. There was an exhibition showing off around 20 of the magnificent instruments built over the years by Colm – among them Pádraig’s sister’s harp!

The summer is almost over. School is about to start again. It’s time for the annual Coffee Morning organised by one of Pádraig’s best friend and her family. Please join us and spread the word!

Pádraig is getting back into his routine here. Not everything is back to the point where it was before the summer but we’re getting there. His physio is back in action and tried out some exercises on the floor today, to find out that Pádraig’s responsiveness and strength had improved quite a bit over the summer. He is really fit!

What those videos show is just a few seconds of exercises that went on for about an hour. To be honest, I’m not so sure how I would have done there myself. This is no joke. And the way he was lying on his stomach, which his feet straight, toes pointing to the floor, lifting up his knees from the floor, or moving his lower legs against resistance up in the air about 50 times – not bad.

I had 10 minutes this morning and checked out wheelchair accessible camper vans and boats (all in German, unfortunately – but with great pictures). Just looking at this made me want to head off. Immediately. Didn’t share it with Pádraig but will. One day!?

Clearing out things you don’t need anymore is great. It marks transitions, it’s a statement that you’re moving on, and it makes spaces for new things.

This is the stuff you get when you have problems eating. You might not be able to eat and get a balanced and sufficiently calorie-rich diet, but a lot of people can drink thickish calorie drinks which their manufacturers try to make more palatable by offering them in different flavours. Then there is calorie powder you can just add to your own drinks or yoghourts and the like.

It’s all a step up from liquid ‘food’ administered via a PEG, a tube into your stomach, using a drip. If you can’t eat either, you can ‘inject’ these drinks through a PEG as well, as soon as your stomach can take it.

When I came across these bottles, it felt like a blast from the past. Recently, time has not been the linear experience it used to be, but even from within this time bubble I seem to live in, this was a memory from far, far away – and yet so close.

The satisfaction of being able to dispose of these bottles and powders was huge.

And now, we have more space for stuff Pádraig needs right now: devices to help him to communicate, to support and strengthen his posture, to assist him with standing, to connect him with the world in all its diversity.

Cleaning out stuff and disposing of it, in this case, was a pleasure, not difficult at all.

Learning new words sharpens your thinking. And the connection between what your thinking and how you express it is not a one-way-street. There is an argument that says: if you can’t capture an idea, a ‘concept’, in a word or in words, it doesn’t really exist. You need language for reasoning.

“Discernment” is one of these new words I had to look up and learn, when I came across it reading about what happened 50 years ago in  Czechoslovakia. When I looked the word up, they gave an example of its use: “an astonishing lack of discernment”.

My own description of what discernment means would be ‘common sense’, but it is much more than that. It’s a virtue that allows you to discover the real meaning of things and to determine whether they are good or bad, whether they make sense or not.

The word was used in the context of the invasion of Czechoslovakia which was commanded by people who were anything but discerning.

It is really and truly worthwhile reading Marc Santora’s article in yesterday’s New York Times about the invasion. And it’s not just his description of events that will capture you, it’s also the picture reproduced in this article that will bring events back to life for you. He writes:

Many of the most famous images were taken by Josef Koudelka, who was on the streets with his Exakta camera loaded with film that he had cut from the end of exposed movie reels.

Mr. Koudelka’s pictures were smuggled out of Prague and published anonymously, credited only to “Prague Photographer.”

In their intimacy and vivid detail, putting viewers on the street with shocked and horrified citizens, they showed the propaganda flowing from Moscow — that troops were sent to restore order and had been welcomed by the people — as utter lies.

If this happened today, people would be live-streaming the events from their smartphones. Or: the government would just shut down the internet and nothing would leak out – because, today, nobody would have a clue about how to cut film from the end of exposed movie reels…

I remember students running through the streets of the cities in Germany shouting “Dubček Svoboda” and “Ho Ho Ho Chi Minh” as the Soviet Union invaded Czechoslovakia to stop Dubček’s efforts to create “socialism with a human face” and as the USA were bombing Vietnam killing tens of thousands of innocent people.

In 1968, there was a belief and an energy around that made many people think they could really change the world and make it a better place for all. Even, or maybe because, there were thousands of bombs dropped on innocent people and soviet tanks rolled through the streets of Prague.

I want to be more discerning than I have been. I want to make more of an effort to look behind the smoke screens. I want to continue the work of the people who wanted to make the world a better place.

Pádraig’s swim was sensational today. Really, to see what water can do to someone bound to a wheelchair is unbelievable. To see how he enjoys being liberated from much of his body weight and just float in the water. To see his super human efforts to walk, to shift his weight from one leg to the other. Today, and that was a first, he was holding on to the metal bar on the side of the pool and relaxed and then straightened first his left and then his right leg, several times in a row, all the time holding his head up high almost by himself and sustaining his body weight by himself.

I didn’t want to leave.

The spectacular is easy. It’s the every-day routine that gets me.

I have wondered about work as a train conductor. Or as a security guard. Or a ticket seller in a cinema. Or any job where you just do what you’re supposed to do. With as little stress as possible. As predictable as it can be. No surprises. No pressure. Where I’d just have to sit it out. It would give me peace of mind, I imagined. A solid doses of boredom.

Then I wondered whether work and life like that would be good for my mental health. The reality of life seems to be, at least in my case, that all sorts of unforeseen things happen that for some magic reason all acquire a dynamic of themselves. They start off as what seems to be a nice, manageable idea. And then, sooner or later, mutate into something that takes over my life.

And here’s me, at 12 or 13 years old, planning my escape to the never-ending forests and lakes, the Canadian wilderness. How did I end up in Dublin.

When we met Pádraig’s friends on the ferry back to Dublin, one of them said to me that he recognised something of Pádraig in me. That there was a demeanour we shared. Not sure how Pádraig would have liked that being recognised or even said, but I thought it was one of the most wonderful things anybody had said about us in some time.

I like to think we do. And much more. Unspoken.

Spending some time in bed and feeling slightly better, I had some time to think about what we took away from those three weeks in the Therapy Centre in Burgau. All completely subjective and all related to Pádraig’s and my experience, even if they were ‘general’ take-aways.

In general, it’s clear that the bigger a place becomes, they more difficult it is to keep the culture, the agreed approach, the way to work, the way to deal with each other. Institutions, the bigger they get, the more it is likely that they develop a self-dynamic that is difficult to stir in the right direction.

There is a huge benefit in covering as many different angles as possible. And that is complex in the case of very severe ABI. Their focus on certain established approaches to therapy is really good, but so is the inclusion of neuropsychology and research, for example around brain computer interfaces. Before it all gets too complex, it is important to get the basics absolutely right: sleeping, personal hygiene, eating, getting up, daily routine. Then you branch out.

In Patrick’s specific case, there are devices that will allow him to communicate better, to move around better, to get fitter, to become more independent, to exercise his body and his brain, to participate more in life, to take more control over his life. None of the cost of these devices would ever be questioned if we were talking about drugs. In fact, the cost of these devices is less than the annual drug bill of thousands of patients undergoing ‘routine’ treatment in areas such as coronary or renal diseases.

We learned about aspects of physio and OT we had not come across after five years of Pádraig being treated. One outstanding example is the importance of the stabilisation of his torso. And do provide him with some support to help him keep it as straight as possible is crucial, for breathing, eating, swallowing, head control to name a few.

We learned that the connections between his brain and his limbs are intact and will start functioning again if they are retrained. We learned that his EEG is as normal as mine or yours and that he is able to understand and think about certain activities and to imagine carrying out these activities in the same way you or I would do it. Meaning that if we managed to ‘translate’ his brain waves into ‘commands’ carried out by a device, he could think about switching off the light, and the device could switch off the light, for example.

We learned that he is medically healthy.

We learned that he badly needs more mental stimulation, much better means to participate, to influence, to comment on, to direct “life”.

I learned that there are so many things that could be done, very few are. And that we cannot do them ourselves. That Pádraig needs motivated, trained, experienced profesionals.

Now I just have to find a way to turn these lessons into a living space.

Shouldn’t be too difficult.

Got out of bed, walked a few steps and had to sit down. So bad was the pain in my legs. I thought being in bed would give me plenty of time to write, to read, even to think about things. But it turns out that lying down, at least with a flu, sweating, trying to keep the bone and muscle pain at bay, puts a stop on any activity requiring at least a semi-alert brain.

We have a birthday in the family today and the plan is to have a fairly small party. But even fairly small parties require some degree of preparation. And while I had all the best intentions to do this preparatory work, I will be more of a burden than a help today.

Each time I feel the way I’m feeling right now, I think about how Pádraig must be feeling, must have been feeling. Being able to participate to a degree, but not to initiate, to interject. Being able to contribute to a degree, but not to physically assist or help to make things happen. Trying to follow conversations but, at times, feeling too exhausted to do so.

The way out of this? – Is to keep going, to move, to exercise body and mind. To stay fit physically and mentally. To do at least one crazy thing every day, or every week. To push boundaries. To question conventions. To explore new territories. To laugh.

Helpless?

Sometimes you climb out of bed in the morning and you think, I’m not going to make it, but you laugh inside — remembering all the times you’ve felt that way.
― Charles Bukowski

My foot!

PS: I thought the first sentence of today’s second reading was brilliant (from one of Paul’s letters): “Be very careful about the sort of lives you lead, like intelligent and not like senseless people.”

Hit by the flu. Legs hurt so much, I can’t even stand up. In bed since lunch time yesterday. Sweating. It happens. And it will go.

Pádraig visited one of his (older in age) friends who  is in hospital with a bad cancer. He is not so well. Incredible to even think about this.

Some people never go crazy. What truly horrible lives they must lead. (Charles Bukowski)

I wanted to be cool and on the inside to make up for the fact that I was born 10 years late. In my early teens I bought Dylan’s first record and I bought the books of Bukowski, Ginsberg, Kerouac, Castaneda. Truth is: I found it really hard to make the connection. It took me years of hard work.

This day in 1020, Heinrich Karl Bukowski was born. He changed his name to Henry Charles when his family moved to the US. Here is a quote by Bukowski someone sent me today:

For those who believe in God, most of the big questions are answered. But for those of us who can’t readily accept the God formula, the big answers don’t remain stone-written. We adjust to new conditions and discoveries. We are pliable. Love need not be a command nor faith a dictum. I am my own god. We are here to unlearn the teachings of the church, state, and our educational system. We are here to drink beer. We are here to kill war. We are here to laugh at the odds and live our lives so well that Death will tremble to take us.
Charles Bukowski

He was a controversial genius. The way genius’ are. Read this again: We are here to laugh at the odds and live our lives and live our lives so well that Death will tremble to take us! How beautiful is that!

We are all amazed at Pádraig’s progress since we came back: this morning, when I asked him a question, he didn’t move his tongue or pressed a switch with his foot, he said ‘yeah’. And when I wasn’t sure whether I had heard it correctly, he said it again. And when we asked him again, he repeated it for a third time. When he was standing he corrected, by himself, he position of his feet, something he had never done before. He is so alert it’s amazing – and it makes it very clear that he needs not just physical challenges, but more mental and intellectual one as well.

The man basically wanted to have seen my face so that when I’ll get up that day he’ll know it’s me he will hand over that award. That meeting was short and sweet.

But then I had another meeting which went on for much longer than anticipated. Time just flew by. A former PdD student, now colleague in UL, is really interested in capturing, in a book, what we had achieved with the Translation Commons (“Trombones”) and, as we were talking, I felt how much I would like this to happen, and how much I would like to support them writing this book. Fingers crossed that this will work out.

The An Saol Foundation Pilot Project is also getting into shape. We now have Board approval to go ahead and negotiate a lease with the owners of the alternative premises we found. Almost in parallel, we will start looking for staff and equipment, and we will design a training programme. We will begin to put together a note that will let people know what it is that we will offer and ask for individuals and families to consider whether their injured family member might be interested in availing of our services.

It will still take a few month to get planning permission, fire and access certification in place – but there is no doubt now, that it will definitely happen. The An Saol Project is beginning to take shape.