We struck it lucky and got to the beer garden on ‘Schnitzeltag’. We went all out and ordered, for auld times sake, a ‘Hamburgerschnitzel’, a schnitzel in butter with Bratkartoffeln, the German version of fried potatoes. The server knew what to do. We didn’t even have to ask. One dish (German size), three sets of cutlery, one each. We shared it square and fair. We even shared the pils – though Pádraig got a smaller cup. He didn’t mind.

Before you think that I’m missing the point of what intensive therapy is all about, be re-assured that I know that it’s not all about going out and having meals and beer on really warm spring/summer evenings in beautiful beer gardens. But going out to have a Schnitzel with Bratkartoffeln and a Pils is the result. Last year, Pádraig was not able to do this.

This year, Pádraig is with a really brilliant speech and language therapist (SLT), at least this week. One thing they have been working on yesterday and today has been using a straw for drinking. It Pádraig continues to progress as he did yesterday and today, he surely will be able to use a straw for drinking – which would make a huge difference for him (though not when drinking beer:). In addition to the SLT, he has his three hours of intensive physio and an hour in the robotic walking machine, the Lokomat — similar to the one that was donated to the NRH but which it can hardly make available to their patients, never mind to persons like Pádraig (or the An Saol Foundation who offered to get the personnel to operate it).

We also got a bit of bad news: apparently, the SNCF, the French railway, are on strike and won’t allow our pilgrim’s train pass through France next week — which means  that our trip to Lourdes has been cancelled, just a little more than one week before we were scheduled to go.

We’ll sleep over it. Tomorrow is another day.

It’s not all about the food. But there is one thing about German food that is different compared to anywhere else in the world – ignoring for a moment their love of wurst and beer.

They are absolutely mad about Spargel, asparagus. They bore you to death with details about asparagus, the different types, the way to grow it, the way to cook it and its availability between strictly defined dates of the year. Well, it’s asparagus time in Germany now and today, we had it for dinner – at lunch time. If you ever had asparagus, you’ll most likely remember its slightly stringy textures. So we were a little bit hesitant to give it to Pádraig to eat. It turned out not to be a problem at all. It seemed like as if he even liked and enjoyed it!

One of the best things that happened today, in addition to an excellent physio session, a great speech and language therapy session, and a walk in the Lokomat, was meeting up with people we have been meeting before, and meeting new people. People who said they really noticed a much more present Pádraig – and they had all the details (they know inside out from their own experience) to give substance to their observations.

It’s good to be away and to get a bit of distance. It makes me think. And tonight I thought: Pádraig and others in his situation have a right to be supported. Not to support them is, in my mind, a violation of their personal, civil and human rights. This is not something abstract. It real. Every day. I will wait after the summer for the HSE to sign the service agreement they’ve had now for almost four month to get going on a project they agreed to almost a years and a half ago.

If they don’t sign that agreement and don’t transfer the funding, I will find the money somewhere else. Even if it has to be a loan. I will move heaven and earth to make this disgrace and scandal known: this is not a lack of resources, this is lack of proper management. It really is beyond believe.

And then I will show them how things can be done if you put your mind to it. Even (or especially:) by an amateur.

Which makes me thing of one of my favourite quotes:

“Amateurs built the ark. Professionals built he Titanic.” ― Elizabeth May

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.