Everything worked out today.

From the time we got up at 4am to just after 2pm when we arrived at the Zentrum der Therapie in Pforzheim. Getting Pádraig up in the middle of the night. Driving him, ourselves and a dozen bags up to the airport. Driving back to park the car at home. Getting a lift back up to the airport. Checking in. Boarding the plane. Sharing a coffee at 39,000 feet. Landing. Getting off the plane. Being driven by a courtesy ‘car’ to collect our bags. Pádraig being escorted the whole way from the arrivals gate to the train station by an assistant who could not have been nicer and more caring. Being escorted to and helped onto the train in Frankfurt. Having another coffee, one each this time, on the train. Changing platform and trains in Karlsruhe. Getting the train to Pforzheim just in time. De-boarding the train  (Deutsche Bahn speak) in Pforzheim and being escorted to the taxi stand to ship the bags to the centre. Walking with Pádraig across the North Town Bridge through glorious sunshine up the hill to the centre and arriving just in time to get the last remaining lunch that they had kept for us. Chicken legs and potatoes. Washed down with a glass of slightly sparkling water. Remembering last year when all food here was pureed for Pádraig and he still had considerable problems drinking water. Having a nap. Going for Abendbrot (literally: evening bread). Going for a walk around the block. Back up to the apartment. A glimpse at Germany’s most loved and longest running TV series, Tatort (from Cologne tonight); no ads on TV license financed channels in the evening. To bed. Until tomorrow. 6am early rise.

The picture is a giveaway. It’s 200 years today, that Karl Marx was born in Trier, in Germany. And what do the Germans do? They issue a euro note with his picture on it! There is a bit of a discussion about what you’d be able to buy for it, but overall, I don’t think it’s such a bad idea. After all, he is not just the (co-)author of the Communist Manifesto (“A spectre is haunting Europe…”) but also of Capital (“The wealth of those societies in which the capitalist mode of production prevails…”).

Maybe what this note is telling us is that “money” is not worth the paper it’s printed on. Maybe, money is not worth anything. Zero. Zilch. Nada. The money we are using today is ‘fiat money’ and its value is determined by supply and demand. But its value is not linked to anything physical like gold, for example. It’s an artificial artefact created and controlled by governments.

The idea of giving it zero value or to abandon it altogether sounds really appealing to me. For some, this idea works; some, for whom humanity took a wrong turn some 10,000 years ago when they invented agriculture and a society where “belongings are more important than belonging”.

Our bags are packed, we’re ready to go… off to Pforzheim in the morning before dawn.

Last year, a woman (was) paid €30,000 over having to travel for abortion to England by the Irish Government. Every year since Pádraig’s accident, we had to go to Germany to get neuro rehab for him. The first time we went just before Christmas and left his two sisters behind back in Ireland. For nearly two years. And we are not the only ones. We are doing this because neuro rehab is not available to him in his own country. I wonder whether that’s comparable…

Two days to go and Pádraig will be off to Pforzheim in Germany for four weeks of intensive neuro rehab, interrupted by his fourth trip on the pilgrims’ train to Lourdes for Pentecost. We have one day left, tomorrow, to get organised.

We picked a nice quiet hour for our trip to Germany, 7am on a Sunday, which sounded ok when we booked it. Two days before we’ll go onto that trip and a thousand things to sort out before we go, thinking about the reality of all of us getting up at 4am and driving to the airport in the middle of the night – well, it’s not worth thinking about because that’s just the way it’s going to be. Two hours flight, hoping we’ll get there on time to catch our train to Karlsruhe where we’ll change trains to Pforzheim. It’ll be an early night on Sunday:)

Forgot to mention that the plan is to celebrate Pádraig’s birthday this year in the Conradh, on Saturday, 9th June. The place is booked and we checked that we’ll be able to get his wheelchair down the steps. In the place of all places. For the night of all nights. For one night only.

Keep the date!

If the state of the building that is home to the Department of Health was in any way a reflection of the state of the Irish Health System, then the only way out would be controlled demolition. Ironically, when I passed by the Department it was this van that was parked in front of it.

While this will most likely happen in the future, what is certain is that Pádraig is demolishing all previously know boundaries for someone with a his injuries, giving the phrase ‘moving forward’ a whole new meaning.

With his feet.

With his hands.

These are no longer just exercises. These are meaningful movements that will allow Pádraig to become more independent and autonomous.

It;s an anagram.

Re-arrange the letters and you’ll get two different fruit.

Pádraig did it today and came up with Melon and Lemon. Not too bad, right?

A very good friend of mine today gave me the present of a book The Chicago Tribune called “The primer for a revolution”. It’s by Joseph P. Shapiro and is called “No Pity”. I started to read it and I didn’t want to stop. Right on the first page it made a point that I have not seen anywhere else been made so clearly and convincingly: that non-disabled people do not understand disabled. Taking a sentence from a tribute to a disabled disability rights campaigner: “he never seemed disabled to me, he was the least disabled person I ever met”, Shapiro says that times have changed. That “most people with disabilities and their families do not see there physical or mental limitations as a source of shame or as something to overcome in order to inspire others. Today, many proclaim that it is ok, even good, to be disabled.” He says that “taking pride in disability is a celebration of the differences among people that gives them a respectful understanding that all share the same basic desires to be full participants in society”.

After all, how would we react, asks Shapiro, if someone said to a black person “You’re the least black person I ever met”, or to a Jew, “I will never think of you as Jewish”, or to a woman, “You don’t act like a woman”.

My mind opened up when Pat said to me, when we were out for a walk for the first time with Pádraig in Hamburg: “Now let’s go shopping!” I thought “shopping????”. With Pádraig??? And I felt similar when we went to a restaurant for the first time, to a concert, to the cinema.

We know Pádraig shares the “same basic desires to be a full participant in society” with us. We have to be ready to allow that to happen.

What is is stoping us?

Did you know that the maximum weight you can legally pick up from the ground is 5kg  if you are a woman and 8kg if you are a man? It’s the end of the weekly shopping trip to the supermarket, that’s for sure.

I learned this today in my “Manual Handling” course — though not the bit about the end of the weekly shopping trip. When I carefully interjected the idea that if you are working on a building site you are supposed to pick up bricks, I was told that this was going to end soon, at least in the case of the heavy bricks.

So patients with a severe acquired brain injury can not really expect much ‘manual handling’ from carers and therapists – at least not if it involves lifting. Manual transfers are a big ‘no no’.

One reason why there will never be an Irish ‘Pforzheim’ – at least not if you follow the rules.

Talking about rules — we received news from Dublin City Corporation’s planners: they have decided to allow us to re-furbish the 100 year-old tobacco factory, BUT we will have to apply for planning permission for ‘change of use’. Because of the incredibly long, complex, and expensive process that would involve, the idea of the An Saol Project using these premises has hit a serious obstacle. So serious, it could mean the end of that idea.

Not something to ponder about late at night… at least not if you want to get some sleep!

Oh! I am so so so so so so so so proud! And here is why!

Following more than four years of “manual handling” without any sort of a “risk assessment” I just successfully completed the online course in manual handling, getting a 100%. I can now look forward to the onsite course tomorrow (10-16, six full hours) for which my new certificate is a pre-requisite.

I am really tempted but I won’t list some of the questions I had to answer to get me through this course. It would be too embarassing….:)

Even though you can’t expect to defeat the absurdity of the world, you must make that attempt.

Here is one thing that has stayed with me from the marathon (apart from the blisters on three of my toes:). At some stage during the last kilometres there was a man standing on the site of the road calling out my name (the names were all printed on the numbers runners had clipped to their shirts): “Reinhard! Ganz locker bis durchs Ziel” which translates into something like: “keep going, really relaxed, through to the finishing line”. It clicked and that short, simple piece of wisdom and advice kept me going. I learnt that pushing myself as much as I could, trying to keep up the pace from the first 30+ kilometres, trying to speed speed speed, was not going to work. I learnt from this incredibly wise man on the side of the road that in order to get this over the line I had to relax my mind and body and just keep it going in a nice and easy pace. Switching from a tense, pushing-forward mode to a relaxed but steady mode made all the difference, and got me where I wanted to get.

A bit of a life-lesson.

It was good to be back home again, to see Pádraig and to share with him the experience of that ‘run’. He was smiling most of the time when I was telling him about it, and left me wondering what he was thinking.

Finally – here is a quote I really like, because it gives reasons to continue:

I finished. No personal best, but I finished, in what to me felt like soaring heat, 20-22oC. And I’m back home about to go to sleep. Happy to have proven to myself that I’m in here for the ‘long run’. There’s no giving up.

But for now: good night and thank you to all who believe that the impossible is possible, to all who pushed me over the finish line! Thank you to Pádraig who makes me do these mad things because he shows me every day that giving up is not an option.

I’m back in the country of 1,2, and 5 cent coins – those never seen anymore in Ireland. Maybe it’s because I don’t get out that much anymore that makes me notice millions of things that before I would probably have classified as pretty ordinary.

It started on the plane. As I had got up just after 5am, I decided to indulge and get a breakfast on the plane (one of those that were included in the ticket some decades ago:). I had checked out the picture on the menu and was really looking forward to it. True, all the items promised were there, but the food came in a card board box, was lukewarm, and soggy. The experienced jet setter might say: so what did you expect? Gourmet food on a plane? Mmmmhhh…

In Hamburg, I passed by a newsstand in the airport and learned that the Stern Magazine’s title was highlighting the fact that many people now have to pay so much rent that it makes them poor (“Arm durch Wohnen”), e.g. €2,000 a month for a three bedroom apartment. Sounds like Dublin. – I also checked out the special issue on Ireland of a really well-respected history publication, who listed the Irish “Kings and Fighters”, Könige und Kämpfer: on a special page, from Saint Patrick to Gerry Adams. Really.

Getting into Hamburg’s version of Dublin’s DART, the S-Bahn, was difficult because of incredibly long queues. Did anybody decide to get onto that train and, in case a conductor stopped them, point to those really unreasonably long queues? – You guessed it! I had the lucky draw of an elderly couple (here’s me talking about ‘elderly’:) from the South of Germany trying to figure out how to buy a multi-person multi-day tourism ticket for all of Hamburg’s transport network. After 10 minutes, the lady got out of the queue and made a public announcement calling on anyone with an expertise in the use of ticket vending machines. Not un-similar to what they do on a plane when they are looking for a doctor. One young woman came forward but immediately surrendered when the other lady explained to her what they were looking for. Eventually, the husband figured it out and amongst a big sigh of relief from hundreds of waiting customers, they went off to the platform to embark on their 3-day adventure trip on Hamburg’s public transport system.

At the Hamburg Fairgrounds, I collected my starter pack (which interestingly enough includes my finisher shirt:). I also located my name on the wall of fame, amongst the names of another million runners in tomorrow’s event. The organisers of tomorrow’s marathon had also organised an amazing one tenth, Das Zehntel (1/10), marathon for school kids today. Wouldn’t that be a good idea for Dublin?

Finally, and already completely and utterly exhausted, I made it into town to have fish in my favourite fish restaurant, Wischer – which, I should have known, has been taken over by a young, ambitious, modern, and brash man. It was packed. People must like it.

This evening, I went through some of the stuff they give you to get ready for your marathon. There was a check list, a test, to see whether you are ready for the big race, “Bist Du schon beret?”, which started off brilliantly: 10 points for motivation. It just felt good. Next question: your age. 56-61: -3. Yes. “-3”. Next question: Do you drink alcohol? More minus points… They say at the beginning of this test that you need at least 60 points to be ready for a marathon. After just three questions (out of seven), my initial ten points for motivation had already almost been cancelled out. I decided not to finish the test and go for dinner instead and then for an early night.

When I said to someone today that I was asking myself why I was doing this crazy stuff, because I know that I won’t have the “fun” others seem to have:) The answer was: “maybe you have something you want to prove to yourself”. Maybe that’s it. Prove that the impossible is possible. Tomorrow Pádraig will be right beside me. All the way. Because we’re in this together.

Fingers crossed.

Thank you to all who have over the past 48 hours so generously supported An Saol via its GoFundMe page – wishing me luck in my attempt to finish the Hamburg Marathon tomorrow! It’s your support that will push me across that finishing line!

What is the capital of Norway? What is the small country between France and Spain? Is the Vatican a sovereign state? — Not the most difficult questions in the world, but – as we found out – not the easiest ones for everybody to answer either. And while I wasn’t there for the quiz-show myself, Pádraig apparently got them right. Spelling them out!

I was at a mini-conference at a University this morning. To be honest, it didn’t exactly lift me out of the doldrums. What people were talking about were really interesting topics and the presentations were very well put together. Many of the presenters were family members of persons affected by serious illnesses and they knew what they were talking about. I can’t put my finger on it, I wouldn’t be able to explain why – but I didn’t really get excited about anything I heard, maybe with one or two exceptions. Maybe it’s just not my world at the moment.

In my world, I’m still doubting all the time whether going for Plan A (‘world peace’:) was the right choice. And whether Plan B2 wasn’t really what we should have gone for: to live happily ever after — looking after ourselves, forgetting about how bad everything is, forgetting ‘world peace’, accepting that we won’t be able to change anything anyways, and that life in the country with an organic garden, a pony and a dog is the way to go. I mean, how many insults do we have to suffer? How much ignorance can be put down to ignorance (rather than to purposeful design)?

In case you’re not living in Ireland, just one example: a woman was just awarded more than 2 million euro because they missed her cervical cancer (‘delayed diagnosis’) when doing regular tests. A deadly mistake because she is now terminally ill and, apparently, has less than a year to live. Loads of apologies have been issued on top of the financial compensation. All in the headlines. But it is the small print that is really infuriating: apparently, it was known for years that a mistake had occurred but no-one had bothered to tell the woman; apparently, there are 206 (sic!) similar cases of ‘delayed diagnosis’ – and it is still not clear whether all the women affected have been notified.

The point is not that someone made a mistake. The point is that they don’t own up. The woman had to go to the High Court to make her case. There is no accountability. The system manages to deal with these kind of headlines and scandals and, in fact, becomes an expert in this activity of ‘picking up the pieces’.

What makes me so sad these days is that I find it difficult to see any possibility for real change, not even enthusiasm for attempting it. Which is why, in the evening, when the sun is setting and another day of trying so hard has passed, I am dreaming of Plan B2 — which would make our life easier and better, while leaving the ‘world’ where it is.

PS: Thank you to all who have over the past 24 hours so generously supported An Saol via its GoFundMe page – wishing me luck in my attempt to finish the Hamburg Marathon on Sunday!