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.

I know, I know, I know, I know… You’re thinking of Pink’s famous song, right?

Dear Mr. President,
Come take a walk with me
Let’s pretend we’re just two people
And you’re not better than me
I’d like to ask you some questions
If we can speak honestly

And you’re thinking: where is the song about the current President? – And you’re probably right.

I’ll be leaving very early tomorrow morning, not to DC (!) but to UL whose President would like to meet with me ahead of me being awarded my university’s award for services to the community in about two week’s time.

I’ve been thinking about what to tell him. Answers to questions he won’t ask. Or only the answers. To his questions. Politely. As expected.

As I am getting older, there are things I never did and will never be able to do. There are things I did and will never be able to do again. I wonder – are there things I was never able to do before but am able to do now, as I am getting older?

Are these silly thoughts and questions? I mean, it’s something you could ask yourself when your 6 or 16 or 60, at any point in your life, really. There are kids who want to stay kids and there are teenagers who want to stay teenagers because they are afraid to loose what they’ve got.

There are few people who want to get older, the older they are the fewer there are.

There was a time in my life I could not wait to get older. I wanted to live independently. I wanted to be able to drive. I wanted to have girl friends. I wanted to pick my jobs. I wanted to start my own family. I wanted to retire. I wanted to do what I thought was the right thing to do.

Recently, my perspective on life and ageing has changed. Now, I don’t want to get older. Because I think getting older now implies that, in the not too distant future, I won’t be able to do what needs to be done but nobody else is doing.

Is it all in my head?

Pádraig is settling back into the routine here. Life is slightly more predictable here (but only slightly) and slightly less exciting. Today he wanted to listen to the ‘letters to the Pope’ published by the Irish Times on the occasion of the visit by Pope Francis to Ireland in a week and a bit. He didn’t want to go shopping, he didn’t want to go for a walk. More than anything else he wanted to find out about what is going on, about what keeps people’s minds and souls occupied.

Confirming what I have been thinking (and saying) for some time: Pádraig needs people to keep him in the picture, to keep him connected with the mood in society, with the people around him, with culture, business, art…

The sooner the better.

Second day of the journey, second time on a ferry. This time from Holyhead to Dublin.

And there they were: three of Pádraig’s friends from college who had studied history with him. We had never met them, although they had been in our house for this small event Pádraig had organised for his 21st.

He was so happy to meet them again, just out of the blue! We had a chat and they updated Pádraig on what had been going on in their lives since they left college. None had the job for life. All agreed that these days, jobs last for about 2 years and then you change.

The last five weeks are crushing down on me. As if my body was telling me: it’s time to recover. Straight into bed.

If you should ever take a ferry from Rotterdam to Hull, the overnight ferry, be careful.

There are no signs on the motorways of Rotterdam showing you the way to the car ferry. There are literally hundreds of signs directing you to ports that are numbered into the thousands, though.

The confirmation email we had received from Irish Ferries just said departure Rotterdam.

Luckily, we remembered that we had to look for the Europort.

Driving through the vast port area in Rotterdam is like driving through a science fiction movie. It’s industrial, there are no humans (visible), it’s all pipelines, containers, and huge ships.

We made it to the port and onto the ferry after almost eight hours in the car. And had a wonderful meal!

Globally, this is shaping up to be the fourth-hottest year on record — the only years hotter were the three previous ones. – So says the New York Times today.

In Tating today, the weather returned to ‘normal’: a bit of rain, a bit of wind, a bit of sunshine, and temperatures that allowed you to breathe.

We’re just in from our last dinner (I was going to say ‘supper’ but resisted) in Tating before heading to Rotterdam, Hull, Holyhead and Dublin tomorrow morning. It’ll take us probably 36 hours to get to Dublin. One of those epic road trips. With plenty of time.