Before

Today, I learned a few important things, the most important one being that you get where you need to get, even if it takes more time then you would wish.

The first kilometres went ok, but too soon a couple of things did not work out as I had planned. A bit of a stomach pain, getting out of breadth, and then – the nagging question of why on earth I was doing this. I started to think that I didn’t really have to continue, if I couldn’t run well. I had to walk. Thought about getting a taxi home.

Then I decided to try a different strategy. I stopped running when I had to and, instead, walked.

After

The result: I finished. Not in a great time. But time was never the issue.

Tonight, my bones and muscles are aching, I am very very tired, but immensely proud for having finished.

During the day, I heard the story of Joseph and his brother Ciaran – which is all about inclusion, about An Saol, about having a life. Check it out here. And there is a short video on youtube about it too. The whole project is called ‘He ain’t heavy’. It made me think that with a bit of luck one day I will run with Pádraig. What do you think?

I heard that Donal made it to the finishing line. Well done Donal. Cian didn’t make it even to the starting line because of some serious work issues, unfortunately. Haven’t heard about Ciara and how the run went for her. Fergal and I had a couple of pints in Toner’s with a few friends and family before we made it home, just about.

Tomorrow, I’ll tell Pádraig that I kept my part of the deal and see what he has to say!

The hardest thing has been done. I got the bag! Now it’s just going to be the run on Monday. There should be five of us with a connection to Pádraig running (that I know of). Someone said “it’s all in the mind”, a friend today (a bit younger than myself:) said to me “there also needs to be something in the auld legs”.

Here’s the bag. Got a lift up to the RDS today to collect it and get all worked up about the big day.  I found the map of the new route in there, so I won’t get lost running up the old route up to Phibsborough.

But before Monday, there is another event some really really generous people have organised for Pádraig in Rhode, Co. Offaly.

We met Arthur and his family a bit more than a year ago in Beaumont. Arthur had been struck by a car while walking to a friend’s house in Tullamore, Co. Offaly, and was critically injured. Luckily, he has fully recovered from this terrible accident and he is back studying in his final year at the University of Limerick and playing with his fantastic band, Ruaile Buaile, up to five nights a week.

His aunt is organising a regular fundraiser around Halloween. This year, she and her family have decided to raise funds for Pádraig’s care. Tomorrow evening, the doors of of Killeen’s Lounge in Rhode, Co. Offaly, will open at 9pm for a fantastic fundraising night with music provided by DJ Sarge. There will also be a Kiddies’ disco on 31 October from 2pm-5pm, also in Killeen’s Lounge.

Pádraig continues to make huge efforts to speak and we have been told that there will be another effort to help him with targeted speech therapy. We hope that that will start next week. The doctors are reducing the anti-seizure medication, as they had decided to stop stimulating medication, which could make him more alert. He is still going out onto the roof terrace, although the weather is getting a bit uncomfortable. But there is nothing like getting out of this room that has been his home now for many weeks and months.

Please support Ciara and Donal Earls who are fundraising for Pádraig by running Monday’s marathon.

And please join tomorrow’s big party in Rhode!

Thank you to all who are continuing to support Pádraig and us! I would long have given up had it not been for your solidarity!

It’s just after 11pm and I’ve been at home for an hour or so. It was a long day and it’s coming to an end. Good.

Pádraig was tired and not so active today. It could upset you a bit thinking about it, or you could say: I have days like these myself. Tomorrow will be a different day, after a bit of rest. I had a day like this today. And can’t wait for a few hours of rest.

More tomorrow!

Just listening to the news @ 9 – waiting time for hospital treatment in Ireland has increased by 12% and the HSE is again reporting a huge deficit. Sounds like as if things are not getting better, but worse. I know that different people have different views on this, but I cannot, as hard as I try, understand how a Government can cut taxes to make people feel good about the so-called economic recovery, when there are so many people suffering. – There also was a report on the radio this afternoon saying that Ireland is short of thousands of nursing home places, with old people in need of a place in a nursing home having to wait four months.

I met Pat in the airport this morning when she was getting of the plane I was about to board. We talked on the mobile across bullet proof glass. What a feeling!

Early morning rise tomorrow to get to Limerick by 8am.

Got a call by the Hamburg Doctor in charge of looking after young people with disabilities who had good news about Pádraig’s treatment and therapy plan following his discharge from the hospital. Looks like that if we find a bigger apartment she’ll have, with a bit of luck, 24-hour care and therapy in place by the time he’ll leave hospital.

Pat had a real good day with Pádraig. He had a double ‘Vojta‘ therapy session, the first in several weeks, one of these where he is on his front on a special Bobath table and the therapist works so hard with him that they both end up completely exhausted. Pádraig moves limbs when the therapists stimulates certain parts of his body. It’s fascinating and amazing to see the effect of this kind of physio therapy.

When I talked to Pat tonight, I felt that today she had a similar experience in the hospital as I had had yesterday. There is a sense of presence with Pádraig, there are reactions, that are all difficult to capture as ‘hard facts’, but that are, nonetheless, there. And I’m sure that they will, over time, more visible and more clearly observable.

Once I’m back from Limerick tomorrow night, I’ll do my mental preparation for the marathon. According to my ‘plan’, I’ll just have to do another 5km on Saturday of a ‘light jog’ before the coming Monday. Easy, eh?

Today was a relaxed day. (I don’t count work in here:) There was no panic, nothing bad happened, no set back, no upset. I was on my own with Pádraig and we had, it seemed, all the time of the world. There are few of those days these days.

I did most of the talking. There was no pressure to do anything. Finish anything. Get anything done. The room was really quiet. The voice from the women down the corridor was barely audible. The autumn sun was shining into the window. Pádraig was so relaxed the machines were getting ready to sound the alarm because of a low heart rate. He was breathing for a long time with the tracheostomy completely blocked off, so he was breathing in and out through his mouth, completely relaxed. It’s strange to say and feel like this, but this afternoon had a real magic. Which I will treasure for a long time.

Tomorrow morning, I will see Pat in the airport when she’ll be arriving, and I’ll be leaving for Ireland. Work. And on Monday, of course, the marathon. There’ll be a group of us, I think: Ciara and Donal Earls who are doing fundraising with their run – their first marathon ever! Please support them generously. And there will be Cian who ran the Hamburg Marathon with me, though I don’t think he enjoyed it – he was in such a rush! And Fergal who got me into ‘running’.

I came across a quote by the late John McGaher who said that “One of the differences between life and writing is that writing always has to be believable whereas life isn’t.”  Isn’t that so true! – But: Sonne kommt am Ende doch.

Oh – I almost forgot: if you are going to the Oireachtas, you’ll be among the first who’ll be able to lay their hands on some really incredibly magic piece of music, song, and poetry. There is a rumour out that the Dreamboat will hit Killarney the weekend after next!

Today’s German Music Tip
Philipp Poisel, Zünde alle Feuer (2010). Kind of a good song, with a really exceptional video.

Sonne kommt 
am Ende doch. 
Und weißt du nicht 
ich liebe dich. 
Und alles was am Ende noch so bleibt

Zünde alle Feuer. 
Plauder auf mich ein. 
Zeig mir dass ich lebe, 
wenn du wiederkommst.

What’s hot
Relax
What’s cold
Panic
The German word/phrase/verse of the day
Keine Panik auf der Titanic!

Pádraig’s doctor came in to say that the EEG they did today was better than the previous EEG, meaning that he was going to reduce the anti-seizure medication straight away. (He had stopped the medication meant to increase Pádraig’s level of alertness earlier when it had caused problems in the form of increased seizure activity – but had increased Pádraig’s daily dose of the anti-seizure drug.) A bit of good news.

Tomorrow, I’ll be going to have a look at new apartments being built by our Wohnungsgenossenschaft. We will need a bigger apartment when Pádraig is discharged from the Schön-Klinik and his treatment continued through day care. The apartments being built are all accessible via an elevator and many have a balcony. Hopefully, there will be something suitable and, hopefully, we are in with a chance to get one of them.

I am so hopeful that Pádraig will make significant progress when he’ll move out of the Institutions. One of the doctors referred to our description of life in hospitals as “Institutionskoller”. I know the comparison doesn’t work, but I think I can much better understand how people who have to or choose to spend years of their life, or their whole life, in institutions. It feels like as if someone had clipped your wings, broke your spirit, and ‘taught’ you that your only chance was to ‘fit in’.

There were times when I thought I could explain to the ‘institutions’ that if only they considered a few simple words of advice, the world in general, and the part occupied by them in particular, would instantly become a better place. In the meantime, i have learned, the hard way, that I cannot change institutions. Worse, I cannot even change people. So I concentrate on what is possible: work with them. At times, this works, at times, it’s very difficult – and on other occasions (few, thankfully), it’s just impossible.

I am so convinced that Pádraig will make really big steps forward out of the institution because that is when he will be less dependent on doctors (because he will be more physically stable) and when the impact of the hundreds of people around the world supporting him with their prayers, their thoughts, their energy, their love, friendship, and solidarity really will make a huge, huge difference to his recovery. There will be real life, with a routine, with things to do, with places to go to – and none of it dependent on doorkeepers. – Don’t get me wrong, Pádraig got great help, care, and therapy; without it he would not be where he is today.

But I really look forward to a bit of normality. Who wouldn’t? – Huups, did I really just write this? Well,…. I don’t really like ‘normality’. And on second thoughts: maybe “Institutionskoller” just means that I have this urge to break out of ‘normality’, out of the institutions. Maybe what I’m looking for is not the ‘paved road of normality’ (van Gogh) at all, but the wild flowers of the anarchic boreen?

They’re gone. Disappeared. Poof! – they just went up in smoke.

Today, we had one of our regular meetings with Pádraig’s doctor. One of the fortnightly half-an-hour kind. One where I bring a list, not to get lost.

Today was different. The Landesärztin joined in, she came to see Pádraig and to chat to his doctor to see how he was and what the plans for his further treatment were.

A few things emerged: they are proposing an operation to fix his bone plate that has failed to join with his skull. This would be done in the UKE (remember the UKE?!). They also want to get him off (or at least down to more sustainable levels) the medication they put him on when they were thinking his level of alertness could be increased by some other drugs. (I know this sounds a bit complex, and it is.)

What transpired during the meeting was that, at least for the time being, Pádraig has lost the “Keime”, the bacteria he had picked up over the past months in hospital. Unbelievable. And a bit of good news.

Poof! Gone!

Today’s German Music Tip
Blaue Jungs Bremerhaven, Hamborger Veermaster (2002). Traditional, very traditional song about Hamburg and four mast sailing ships…
What’s hot
Poof!
What’s cold
Operations
The German word/phrase/verse of the day
Ballerkopp