We’ll be getting up at 4am tomorrow. That’s the bad news. The good news is that we’ll be going to the airport to catch a plane to the sun.

We’ll be heading off to Spain, North of Barcelona, for Easter. As we always (well, almost always) did. What if not that is normality? When we were told about this life not worth living, this ‘intolerable’ life. this life not worth any further ‘investment’ because there was no ‘return’ on that investment? I mean, eat your heart out….

In the meantime, I had this thought. It’s not really funny. But it is curious.

You all know about the waiting lists for everything in the health service, even – or especially – for children. Over a year for scoliosis treatment, more than two years for speech and language therapy. Often more than 2 years for rehab.

Now, the current proposal for legislation on abortion in Ireland is that it will be legal within 12 weeks – if the Irish people decide to take out of the Irish constitution the 8th amendment in a referendum to be held this coming May.

My thought was: how on earth will the Irish health service deliver abortion services within 12 weeks? If they cannot deliver the most basic health care, life saving, services without year-long waiting lists?

Rome was not built in a day, opposition will come your way. But the hotter the battle you see, is the sweeter the victory.

When I heard “You can get it if you really want” by Desmond Dekker on the radio today, I thought that someone was doing magic and had sent me this song. Had sent us this song, at a time when I felt a bit discouraged and resigned.

Persecution you must fear. Win or lose you got to get your share. You’ve got your mind set on a dream, you can get it though hard it may seem now.

But then – this is how the world goes. Not the way you want. Not at the pace you want. Not under the conditions you had expected.

Really, if that Stormy Daniels interview doesn’t cause a revolution, if Emma Gonzalez’ speech at the March for our Lives doesn’t begin an uprising but provokes former US Senator Rich Santorum to say that rather than protesting the kids should learn CPR – what chance have we got to change people’s hearts and minds about affording a life to those the health system has written off – more often than not based on a scandalous because widely known yet ignored mis-diagnosis. (In Ireland, there is strong evidence that 60% of those diagnosed as being in a persistent vegetative state are, in fact, conscious.)

We keep going, anyway. And we’ll try. Try and try. Try and try. And we’ll rise and we’ll succeed at last.

There was a moment when I thought I had lost everything, well – almost everything, in my life. My job, my friends, my life plan, and, of course, Pádraig. My independence. I thought, no matter what happens to you, you are in charge and you can decide what to do next – though not if all of a sudden there are huge responsibilities put upon you and when people depend on you. In that case, taking decisions for myself had to come second to my responsibilities for others, my family.

Then I thought what life would be without these responsibilities. Without looking after those, as best as I could, who are closest to me. I realised that I depend as much (if not more) on those who took away part of my independence, my liberty, my life plan, – as they depended on me. Without them, what sense would my life make?

You could call that a dialectic relationship, between a person who wants to be the independent captain of their fortune and the person who realises that without others there is no fortune, content, or happiness. – Makes me think of Christopher McCandless waking “Out of the Wild” where he had tried to become stronger by depending on nobody, realising that “happiness is only real when shared“.

Pádraig went to visit his last surviving grand aunt this afternoon. Two of his great friends visited him later and shared with him their latest news. They brought biscuits and cool-dude attitude. I wonder how they feel being with Pádraig. What they think and how they relate to him.

I went for a 24k ‘run’ and just about made it home. There’ll be a 28k run next Sunday and a 32k run the following Sunday. No idea about how that will be possible. But I will try.

Half of Pádraig’s carers will not be here this coming week. The idea of going on holidays in ones and of avoiding overlapping holidays has not gained ground yet.

Heard from a source in the HSE that the service agreement will be signed next week. Fingers crossed.

We did what thousands of people did today in Ireland: we enjoyed the sunshine and near-mediterranean temperatures consuming large quantities of fresh home-made Italian gelato. It was magic!

In the evening, we went to the month’s mind mass for our friend Louise, whose 60th birthday it would have been today. Louise remains, and always will remain, with us and especially with Pádraig.

It’s hard for Pádraig to lift up his leg from the ground up when he is sitting in his chair. Try it out yourself and you’ll find out what I mean.

It’s quite a bit harder for him to lift his leg up from the ground in stages. 1-2-3 going up, and 4-5-6 going down. Try it. It’s hard.

Yet, this is exactly what he did today. Not just once or twice, but a few times. For the first time ever. Another first.

As if that hadn’t been enough, he started to move his arms (almost) by himself when he was using the arm trainer in the MOTOMed. A little bit more than a year ago, we had a discussion with a few important people telling us that using the arm trainer would damage Pádraig’s shoulders.

Sometimes, it’s better to question what important people are telling you. And sometimes, you’re better off ignoring what they’re telling you.

Why something that seems ‘bad’ can, in fact, be brilliant news.

The Barthel Index is a scale used to measure performance in activities of daily living (ADL). Each performance is rated with a given number of points. It uses ten variables describing ADL and mobility. A higher number is “better”.

The ten variables addressed in the Barthel scale are:

1. Presence or absence of fecal incontinence
2. Presence or absence of urinary incontinence
3. Help needed with grooming
4. Help needed with toilet use
5. Help needed with feeding
6. Help needed with transfers (e.g. from chair to bed)
7. Help needed with walking
8. Help needed with dressing
9. Help needed with climbing stairs
10. Help needed with bathing

You don’t have to be an expert to realise that Pádraig needs help with all of the above. And that he will score low using this index. Yet, it has recently been used to describe how he is doing.

And here comes the surprise: even the very idea of using the Barthel Index to capture Pádraig’s condition would have been completely out of the question not that long ago and has never been done. Initially, the matters to be addressed had nothing got to do with ‘activities of daily living’, they were much more serious. So this is a first.

Because earlier, what doctors used to describe his condition was the Glasgow Coma Scale (GCS). And using this scale, he scored – initially – the lowest possible score, working his way up, slowly.

The lesson: things that initially may sound negative can highlight brilliant developments if put into proper context!

Two months ago, I signed a service agreement with the HSE, following more than a year of negotiation and work, having received the official go-ahead from both the Minister of Health, Simon Harris, and the HSE. I have been trying to find out when the HSE will sign it or whether there is anything that is delaying the start. The answer to my enquiries was that it hadn’t been signed yet. – With the best will in the world, I fail to understand this. Do you?

I have decided to work on a monthly programme with Pádraig, with monthly goals. And focus on particular aspects of his rehabilitation and recovery, like developing particular motor skills or muscle groups.

And, I will try to stand Pádraig up every day not in his bed but in the standing frame. A bit more challenging. But challenges are there to be overcome. And they will be. And so will he and ourselves.

We shall overcome. One day:)

You know this game where two players throw a ball at each other with a third player between them trying to catch it? It’s called ‘piggy in the middle’ and that’s what we played this morning in München’s Central Station with the lift. We were between to floors and each time the lift stopped at our level it was either bringing some stuff up or bringing some stuff down. It was never empty. So I run up the stairs and brought the lift down where Pádraig was waiting for an empty lift to arrive. It would all have been fun, if there hadn’t been a snowstorm in -4oC and if we hadn’t just got up at what felt like the middle of the night to catch a train to the airport.

Once we had literally highjacked that lift from the various shopkeepers and cleaners transporting their ‘stuff’ up and down, we made it to the platform where we discovered that this line was not just going to the airport but also to Unterföhrung where thousands of employees work for Deutsche Bahn. Meaning: it was packed. Really packed.

In the end we made it, tired but happy to be back after this long weekend adventure.

There is stuff you’d never think of that becomes routine travelling with Pádraig, like beds that are way too short, beds that are so low that transfer from bed to chair becomes very tricky (there are, of course, no lifters), doors are too narrow, lifts to small, some people are extremely helpful, some are utterly obnoxious.

Does that sound like life to you?

We didn’t expect to pass through “Kissing” this morning. Though it was a nice surprise:) We learned more about “Kissing” (not better time than the present:), as well as about the German train system and ‘mobility’. For example, that the wheelchair space on trains should be kept clear for wheelchair users so that passengers can board and get off trains more swiftly and don’t delay trains… – that’s what the sign in German says:)

And that when trains are delayed, the announcement doesn’t apologise for a delay, well it’s not really a ‘delay’ anymore, the concept doesn’t exist in German anyways, but it says that “this train today will run 5 minutes later than the scheduled time” – check it out on the short video below:) No ‘delay’ and no need to apologise. They must have spent millions on this really smart marketing-driven twist on ‘delays’.

We went to the Therapy Centre in Burgau, an hour and a half away from Munich by train – though in our case it took almost an hour longer, unexpectedly, because we learned during the journey that our train would arrive on platform 2 and that there were only stairs off that platform which we could not have navigated with Pádraig. So we had to travel on a few stations further, Günzburg, which has lifts, wait for the train back and get off in Burgay, this time on platform 1, which is right beside the exit from the train station. Good job we had left a ‘bonus’ hour for the trip, so we didn’t arrive late for our appointment.

We went to Burgau for a neurological and rehab assessment. That all went extremely well, with Pádraig taking everybody by surprise, pushing his wheelchair forward almost (maybe 50%) by himself! A pretty good job! Completely unexpected and un-“rehearsed”. And another first!

Tonight, I met an old friend. For a few hours, I felt a whiff of the carefree me from a long time ago. We laughed a lot as we updated each other on our lives. Not that either of us had much to laugh about, if I think about it. But it was good to laugh. And to pretend I could be someone who I once was…

Tomorrow, well, it’s back off to Dublin in the early hours!

When we were getting the tram back from the German Museum to the Central Station where our hotel is, we were looking for the display showing the time we would have to wait for the next trams. There weren’t any. Instead, they had a printed timetable displayed showing the exact arrival of the tram. And, again, of course, the tram arrived exactly at the time shown in the time table for this stop. No need for any digital displays.

The Museum is mind-blowingly nerdy. The level of detail in each of the sections is incredible. And it’s not about any-things it the ‘things’ themselves. So – it’s not about the famous Enigma encoding machine, they have a few of the 100,000 machines used by the Germans during the war (and de-coded by a team around Alan Turing) on display, the originals. They have an Apple II, the first Mac, the first Apple laptop, the first DOS IBM PCs (I have one of those in the attic, I noticed with surprise:), the first analog computers and many, many more historic machines you otherwise only find in books. Informatics is just one section. They do the same for weather forecasts, for weights and weighing machines, and other weird and wonderful stuff.

In the morning, we had decided to walk with Pádraig to the Isar river where the museum is located. When we stepped out on the footpath it was so cold that we decided to step back in to the next Brauhaus to have what we would have called Sunday Brunch, the German called it dinner. Back out on the footpath to the famous Marienplatz, freezing cold feet, nose and hand, back into Cafe Rischart where we had cake that was almost too nice to look at for it to be eaten. Rischart started their business in 1883 and they used that time to really get it all right.

The one thing Pádraig did not enjoy was the demo session in the Museum where they showed how high voltage electricity works. Saying that there were some sparks flying would be an understatement. But otherwise, he really enjoyed the day, the walks, the meals, a bit of Bavarian beer, the people walking by, the cold air, the tram ride…

We’ll have to get up early tomorrow to catch a train to Burgau.

PS: I’ve been thinking about the business of encoding messages. Why they used the Enigma. How they managed to break the unbreakable code. About what happened to the man and his team who broke the code.