Lost

images1Sometimes. Sometimes the days are so full that at the end of the day I wonder, in all honesty, whether it was just one, or whether it was two days that just past. There are so many people, so many places, so many things, that I wonder, sometimes, how they all could have possibly fit in to the one 24 hours that just past.

Pádraig was almost back to where he had been before the infection. Heartbeat, temperature, oxygen, all back to (almost) normal level. It’s really reassuring that the nurse who is looking after him these days really knows him well and knows us. Life could be much easier if we could rely on everybody as well as we can rely on her.

We had two visits today. One from a residence who wanted to see whether Pádraig could be admitted. He could. The other visit was from a Carer who wanted to see whether he could take Pádraig on when he leaves the hospital in January and moves in with us. He could. Now we just have to see how things are going to work out.

Pat got back today. How brilliant is that!? It’s when she is away that I realise how much I want to tell her every day, ask her, get her opinion, share with her what is going on. There’ll be another few weeks and then the travel back and forth will slow down a little.

imagesIt’s Halloween night today. In Hamburg. Talk about globalisation. It’s also Friday night. Maria was on her way to the Oireachtas tonight when I talked to her. Life goes on. Although I still wonder how this is possible.

I remember when I heard of Pádraig’s accident, when the reality slowly sunk in, I thought of Auden’s poem “Stop all the clocks, cut off the telephone…’ the world had just stopped turning, for me. For me. For the rest of the world not much had changed.

There are friends and family for whom the world hasn’t stopped. They deal with the reality of what has happened much better. And they take me along.

“So many people live within unhappy circumstances and yet will not take the initiative to change their situation because they are conditioned to a life of security, conformity, and conservation, all of which may appear to give one peace of mind, but in reality nothing is more damaging to the adventurous spirit within a man than a secure future.”

The reality is: there is no secure future. Never. The reality is: we all walk Into the Wild.

Storm

Screen Shot 2014-10-30 at 17.26.00‘Gonzalo’ sounds mediterranean, or at least Spanish-speaking and from the Caribbean, maybe. Warm, anyway. Well, this Gonzalo was a storm which hit Europe and caused the first snow fall in the south of Germany.

Who would ever have thought last year that Pádraig would still be in hospital today? When snow starts falling? Who would ever have thought that there would be another cycle, that we would start doing again what we did last year? Looking for carers and therapists (outside of the hospital setting this time), and looking for a place to live (this time with Pádraig). If all works according to plan, there might even be another few trips to IKEA on the cards. In the “it-couldn’t-be-a-smaller-car-than-this” Picanto.

Pádraig’s doctor and then his senior doctor both talked to me about Pádraig’s slight setback of yesterday today, which coincided with yet another doctor going ahead with a scheduled procedure (changing the catheter) while the one of the former was planning to try out a less invasive method again as we had agreed. My father would have said “wenn man nicht alles selbst macht…” – you really have to do it all yourself if you want to be sure that things are done as they should. Why, why can we not did it all ourselves?

The truth is – we can’t.

So Pádraig is on an antibiotic, the first time in three and a half months. He is on a higher dose of an anti-seizure drug again (as one of the side effects of the antibiotic is an increased risk of seizure). He got a fever (which has thankfully come back down today). His heart rate went up considerably (also down again). And his oxygen levels went down to a point were he needed additional oxygen for the first time in a long time, if only for short periods.

Wenn man nicht alles selbst macht.

If you’re living near Rhode, Co. Killeens Fancy Dress (2) copyOffaly, and want your kids to have a great fun-filled Halloween afternoon, please support the Kiddies Disco organised in support of Pádraig for tomorrow afternoon by Andrea Stone and her family and friends.

They are doing an unbelievable job for someone who shared a hospital stay with their son and nephew last year. We are so happy that Arthur has fully recovered in the meantime and is back in college in his final year, and also out and about again with his fabulous band Ruaile Buaile. Listen to them playing This is the Life.

And you’re singing the songs
Thinking this is the life
And you wake up in the morning and your head feels twice the size
Where you gonna go? Where you gonna go?
Where you gonna sleep tonight?

You’re singing the songs thinking this is the life. This is the life… Thinking… Singing the song…

Screen Shot 2014-10-30 at 17.51.55This coming weekend is the weekend of the Oireachtas, probably the biggest and most important date in the Irish language calendar. This year, there will be a table where Pádraig’s friends will pre-launch (and sell) the Dreamboat CD with music, songs, and poetry they recorded over long days, nights, weeks, and months for him. I haven’t heard it yet, but I’m sure it will become Christmas No. 1. It’ll take over the charts in a storm as Gonzalo took over the South of Germany. I know that because we will make it happen! We will.

Today’s German Music Tip
Heintje, Ich bau Dir ein Schloss (1969) – How could I have forgotten about Heintje? He was my mother’s superstar and I (like many other boys of my age) were just going to turn out as ‘lieb’ as he did. Watch the ‘Kleinbahn’ – it could be the one in the Westfalenpark in Dortmund that we were allowed to board on really really special occasions. It was an expensive special treat. Can you imagine?
What’s hot
Taking life by storm
What’s cold
Trying to do it by yourself
The German word/phrase/verse of the day
Mensch, haste noch alle Tassen im Schrank?

Bahnsteigkarte

Not taken by me this picture of an authentic Hamburger Bahnsteigkarte!

Not taken by me this picture of an authentic Hamburger Bahnsteigkarte!

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Tonight, at S1 Friedrichsberg: “Entry only with a valid ticket or Bahnsteigkarte!”

I thought they didn’t exist anymore because I had not seen them for a long term. They became famous internationally when Lenin (remember him – he Germans send him to Russia on one of their fancy trains to start a revolution) said many years ago that the first thing German would do if they planned to start a revolution in a train station was to buy one. I am talking, of course, about the Bahnsteigkarte. It doesn’t entitle you to travel anywhere, but you are allowed to enter the train station and the platforms in that train station.

Without one, you’re not allowed even to enter the station.

Where but in Germany?

Today was a good day, because Pádraig had two visitors on the one day. I am sure he was delighted to hear some other voices, and see and feel their presence. The two previous days, he had had another visitor. It really is unbelievable to see how after such a long time, his friends remain loyal to him, visit him, tell him what’s going on back in Ireland, keep him in the loop. This is really really special and something I admire immensely.

Today was a bad day, because it turned out that he has an infection which has to be treated with an antibiotic, most likely an infection of the urinary track, to do with the catheter which still has not been removed. We thought it would be and when I asked whether there had be a change of plan no-one knew. I’ll find out tomorrow, I hope. Pádraig also coughed up some green stuff which had to be suctioned orally, irritated him, and make him throw up a bit. He’s also getting an increased dose of anti-seizure medication again and a lot of water. It sounds and feels like a deja vu. Why is all this happening, again?

Checked out a new building project which my ‘Genossen’ in the ‘Genossenschaft’ are finalising. We’ll apply for one of their new apartments with a balcony and a slightly bigger layout in general. We should know in a week or two whether we were successful. Fingers crossed.

Sore

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This morning, Pat and I met with a physio working in our local HSE clinic. She told us about the physio that would be available to Pádraig in the community services in Dublin. Pádraig would get a few physio sessions, about 15-20 minutes each, and then they would coach the carers in some physio routines. The carers that would come about 3, maybe 4, times a day to our house. When we asked her, she told us that there is not one physio in the HSE community services specialised in neurology. Not one. Ni uno. Nil. We also asked about equipment such as the viva el MOTOMed. The HSE has them. And there is a chance we would get it. For about three months. Then it would have to be passed on to other people. We didn’t ask how long it would take for it to ‘circle’ back to Pádraig.

Later in the morning, we met an architect to discuss what would have to be done to our house to accommodate Pádraig’s need in relation to a bath and bedroom facility; how to go about to build it. It’s going to be expensive. And it’s going to take time. Nothing decided. Just exploring.

After a rush to the airport, the tram, the train, the S1, I was back with Pádraig who had a friend visiting him from Dublin, which was really nice. I know and understand by now that it must be difficult at times for old friends who see Pádraig only from time to time to deal with the new situation. That’s why I, and I am sure Pádraig, appreciate it so so much that they all keep visiting, that they stay in touch, that they are with him, telling him about what they are doing, what has been happening in their lives. It must be so encouraging for Pádraig to here these familiar voices and see those familiar faces!

His nurse was so nice to offer her help to sit him into the wheelchair; he then also had some time for the MOTOMed – not that much altogether, but sufficient to get a break from the bed.

When we were leaving the nurse that had talked to Pat about the cap for Pádraig’s speech valve came over and said she hope that Pat had not taken it in a bad way. Of course she had not. It’s just the stress of having to deal with such situation that are, of course, not and never intended to be that way. It was such a nice and genuine gesture to come over and talk in such a nice way about such a difficult situation. Fair play.

I am still so sore, tired, and exhausted. I put the marathon medal (yes, I got a medal:) over Pádraig’s bed and repeated to him that we had a deal going on here.

My and our thanks again to all who raised funding for Pádraig via their participation in the marathon! You did well (Ciara ran under 4 hours!) and raised hundreds of euro – so did Donal! Well done to the two of you!

I thought that I should set up a sponsorship to my run : one euro for every minute I ran  – the only way to outperform, maybe, Ciara and Donal.

Lesson

Before

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

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!

Marathons

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imagesA bit more than year ago I made a deal with Pádraig that he would try really hard to get better and I would try really hard to run the 2013 Dublin Marathon. We both kept the deal and our promises. He tried really hard and I did too.

Then in May of this year, we made a similar deal. This time it was the Hamburg Marathon.

Tomorrow, it will be the third deal for us, and, as with the previous deals, I am sure he will keep his end of the bargain as will I. We will both try very hard.

I told him that I’m ready to do this running lark for as long as it takes – but that I wouldn’t be disappointed too much if tomorrow was the last run of our deal, just in case it turned out that he was going to take a few really big steps towards getting better.

As it happens, tomorrow, it will be 16 months to the day that this 4.3 ton van hit him on what we now know has been a well-know deadly strip of a country road for cyclists and pedestrians – so narrow that a cyclist and a truck do not fit beside each other in one lane, so deadly that they are now investing US$6m to make it safer.

I told Pádraig that I will be running in the company of giants: friends without whom he’d never had got as far as he did, without whom I’d long have been drowned by these relentless tsunamis hitting us for now 16 months.

Someone once told us that this was no sprint, that it was a marathon. They never mentioned that it was not just one, but a whole marathon series.

We’ll keep going. Making deals. Trying really hard. Moving.

Eventually we’ll get there (it’s not about the time it takes, it’s about finishing) – knowing that if we stumble on the way, there will be someone there to help us up. And that makes all the difference!

Thank you to all who wished us well for tomorrow! Good luck to all who’ll be running!

Bagged

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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.

141025 Rhode Offaly paperWe 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!

Killeens Fancy Dress (2) copy

 

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!

Rest

UnknownIt’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!

 

Table

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.

UnknownPat 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?

Relaxed

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.

UnknownI 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’.

imagesI 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!

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