Life is too short to be small. Meaning that if we want to make a difference or even if we want to enjoy life – we have to do it big. That’s the message. Not to “Just do it!”, but to really pull out all the stops. To invest all your creativity, all of your passion, all your conviction into that one thing.

A few days ago someone told me about their life as a manager with McDonald’s. About the excitement of planning and executing the opening of new ‘restaurants’. About planning staff and supplies with such details that they could cover peaks and troughs in less than hourly intervals. About being involved in this work so much that they worked day and night. That they didn’t even sleep for days on end if something had to be finished. Such was the dedication. To McDonalds.

If someone does this for Mc Donalds, I mean, seriously, how is it that it’s taking us years to get our Day Centre off the ground? That is just beyond believe! Maybe we should just pretend to develop a new Mc Donalds and then, at the last minute, swap the red and yellow sign for the An Saol logo? Maybe we are looking and waiting for certainty when there isn’t and will never be? Maybe we just have to take a risk and do what needs to be done because it needs to be done? Would doing it that way be reckless? Or just determined?

Pádraig changed therapists today. He is now again with the physio he had in previous years and with an SLT standing in for their colleague who will be away on leave for a bit more than a week. It’s great to see the different approaches they are taking. To learn from what they are doing. To reflect on what is achievable during the time we’ll be here and beyond.

With all the enthusiasm we have for making this place a better place to live in. For all of us.

Pádraig is doing great work. Here is an example. It looks like something he has done before: pushing and pulling an object away and towards him. In this case a small step stool.

What is different here is that he is standing, not in his standing bed or a standing frame, but by himself and supported by therapists and myself. That difference is humongous. He has to keep his balance, check that his legs are in the right position and keep his upper body and hips in balance.

There was a time when what I wrote was what I was feeling, what was happening, what I was thinking. I didn’t think twice about it. I was living a life dominated by existential threats: practically loosing my home (for several years) from one day to the next when we went to Hamburg; seeing my family split up between countries; struggling to keep my job; and above all, a constant threat to Pádraig’s life.

Almost five years later, Pádraig’s health is relatively stable and improving (with constant uncertainties lurking in the background); going back to my work was made practically impossible; we are still travelling between countries; there has been another health scare in the family; relationships, emotions, energy levels, hopes, my positive outlook – all that and much more is constantly being tested; at the same time, all that gives me the strength to get me through difficult days and moments.

Over time, I have changed and changed what I am writing about. There have been threats, comments, requests, or just views passed on to me nearly breaking my spirits. There has also been incredible encouragement and support. But I know that what I am writing is not as raw as it was, is a variation of reality, is lacking the despair, the passion, the fury, the ‘I’m beaten’-taste, the aggression, and the depression of my life. It’s sanitised, cleaned up, covered.

I once worked for a company that made its fortunes on a product called 1-2-3. It was that easy to use. That was their message.

Here is my 1-2-3.

(1) Persons with severe acquired brain injury have been abandoned by the Irish health system – with dire consequences for them and their families. I could go on and on and on about what these ‘dire consequences’ are, from mental health, to physical health, to financial and relationship issues, and I am sure many of you could add to this list yourselves. This is a, largely untold, scandal.

(2) The Irish health system, represented by the HSE, is not capable of providing the support these persons require – and, I would say, are entitled to in accordance with their human rights. This is despite the Minister of Health and the HSE publicly stating that they would provide this help, at least in terms of the provision of funding for a three year pilot project aimed at connecting what research into neuro rehab for severely brain injured persons has been telling us for years with the reality of neuro rehab. This is, sadly, not surprising, given the dysfunctional state of the HSE. And there is not much we can do about that.

(3) We need to offer an alternative to the offering by the health system and demonstrate how neuro rehab can be brought into line with recognised standards of care and the human rights of those affected. Rather than continuing to write begging letters to the HSE to please honour their commitments; rather than wasting time trying to comply with their requirements which are largely an exercise in ticking boxes anyways and an attempt to protect themselves;  rather than draining energies and becoming depressed because of a lack of progress. I will start writing and implementing a plan that will allow us to deliver much of the services that are needed. Starting tomorrow. And to be implemented before the end of the year.

Couldn’t be easier.

And. I could not even contemplate what failure would mean.

It’s Mother’s Day today in Germany, just a few days after what used to be called Father’s Day but is now called Men’s Day (Männertag). There was no breakfast in bed and there were no flowers, but we decided to celebrate the day by joining the good people of Neuenbürg for their annual open air street festival. Neuenbürg is just about a quarter of an hour South West of Pforzheim, by car which we borrowed from the centre.

As it happened, it was the first really miserable day since we arrived here. We felt with the people of Neuenbürg because the festival was – while not a complete wash-out – let’s just say: pretty quiet. There were tons of food and general store-type stalls in the streets, some of them selling stuff I hadn’t seen in years, like a woven ‘carpet beater’ (Teppichklopfer), a witch-type broom, or real authentic handkerchiefs (yes, the ones you wash, dry, and iron after use:), and there was also stuff I had never seen in my life, such as the original ‘sock hanger’ (“never loose the matching sock”), or a round-shaped plug brush (“Steckdosenbürste”) that should, of course, be on hand in every well-stocked kitchen. All this under the May Tree, the “Maibaum”, and right beside the food stall selling, just today, German Asparagus. Not Polish, not Hungarian or Italian or Spanish, no – but German asparagus!

We bought some of those weird-shaped brushes and had a portion of Maultaschen, the local variety of super-sized ravioli before we went back to the car, put the heating on to full power and drove slowly back over pothole-covered roads to Pforzheim.

No Eurovision Party tonight. No excuse to stay up into the small hours. Instead: geating into bed early to be ready at the crack of dawn for week 2.

I bet we’re all watching the same show tonight, the world’s biggest song contest, the Eurovision! Right? It was so funny when I asked the (pretty young, relatively:) therapists yesterday where their Eurovision party would take place — Eurovision… mmhhh, they had heard their parents talk about that…

We’re about half way through the contest and, as an old (I should rather say: long-time:) follower of the contest, I’m really impressed. More countries than ever are singing in their own language – except for the Germans who got Ed Sheeran’s brother to help them out with a song about his dead father. As a country that survived two world wars (caused by themselves!) they will survive, it that should happen, another last place and be back with a vengeance next year. As one of the largest net contributors to the contest, they don’t have to pass through the preliminaries but go straight to the finals…

We all had our lie in this morning, a long, relaxed breakfast and, instead of lunch, a big ice-cream in town, and snacks on our tiny but very romantic balcony overlooking the neighbours’ balconies. This is, after all, Pforzheim’s north side, known for its international, a bit run down, and very working class neighbourhood.

Pádraig had a day off today too, except for a spin on the MOTOMed where he managed to get a new personal best, a PB, with more than 52 rounds per minute.

Not sure whether I will make it to the end of the contest or even the voting. Jessica Mauboy is just singing for Australia (yes, AUSTRALIA, *not* Austria) in this Eurovision Song Contest and I’m not sure whether I’m starting to see sings. Just a few minutes ago someone seemed to have taken away the microphone from SuRie (Annie Lennox’ sister) singing for the United Kingdom. I’ll go to bed and have sweet dreams before stuff gets too crazy for me.

I’ll find out who won tomorrow:)

The first week in Pforzheim is over and I’m exhausted.

This is the routine: I’m getting up at 6am and get myself and Pádraig ready. We go over to have breakfast in the main building, a 5-10 min walk, taking into account the lifts and road crossings involved. We have breakfast there. Then therapy, three hours of physio, starting at 8am. There’s one lead therapist, an intern and myself. We follow a programme involving stretches, standing exercises and walking. At 11am Pádraig has an hour of SLT. The programme finishes with an hour in the robotic walking machine, the Lokomat. We make lunch usually for 1.30pm, just before the kitchen closes. Back at the apartment at 2.30/3pm. We take an hour or two of a rest and go out for 2-3 hours, either just for a walk or to go shopping. While we had dinner in the centre for the first few days, we’ve started to have it in the apartment – being able to choose what to eat is more attractive than German-style Abendbrot. Padraig goes to sleep at around 9pm, leaving an hour or two to chill. Before I go to bed, I turn Pádraig; and then again at around 2 or 3am.

Tomorrow morning, we’ll all have a well-deserved lie in.

I’ve been talking, thinking, discovering and comparing.

There are injured here whose accident occurred 16, 20 and more years ago. They were in their late teens, their parents in their thirties, when disaster struck. Some have been telling me that their adult children receive up to 15-18 hours of therapy every week and that they have been regulars at different therapy centres for many years. Those injured have clearly benefitted from all that support, and have regained some level of independence but none of them can live independently. Some are living with their families, some are being looked after around the clock by paid carers.

I have been thinking back to 2015, when Pádraig came here for the first time. He was on PEG nutrition and only eating small amounts of pureed food. He had started to take some liquids orally, but just very small amounts. One of the first things that happened here was that we were told to stop PEG nutrition. What followed were what we considered to be huge steps forward. No miracles, but very significant steps forward, giving us high hopes. I thought that with the right support Pádraig could recover maybe not all of his independence but a high degree, within a few years.

Over the past 3, 4 years – and that is still a really short time apparently, given Pádraig’s injuries – Pádraig has been making really significant progress, but his progress happens (mostly) in small steps and takes time, a lot of effort and persistence. Staying ambitious, pushing the boundaries, inventing new approaches, staying fresh, recognising and celebrating progress — all of this becomes more challenging as the years pass. Giving in, surrendering to routine, accepting things as they are, getting into a rut, becoming stale and drained of energy, staying sad — is like a honey trap, it sucks you in with the promise of a calm, less stressful life, slightly sedated almost, slowly but surely leading to the end of the line.

The families I am meeting here, those who have been through what we are going through, have adjusted their lives in slightly different ways. There are the ones who go along with their adult child, providing support wherever needed, but also letting go of them. There are others whose lives seem to have been taken over and absorbed by the care they provide to their family member. Hope for independence, self-determination seem to have disappeared. They all keep going, but it’s not always easy to see the spark, the enthusiasm, the energy that was there, no doubt, many years ago.

Systems originally created to provide support have morphed into systems that create dependencies and demand compliance; systems that are always right, never wrong; are self-preserving, self-centred. When change is needed, they take as their starting point the status quo.

Einstein has defined insanity as “doing the same thing over and over again and expecting different results”. If Einstein is right, we’re accepting insanity as the norm.

There is nothing new about this thought, really. The real problem is: what, if anything, will I do about it? Without going insane myself?

It was the coolest of the cool movies that year. (It’s available in German only, I believe.) It had made it to the Cannes Film Festival where it had become an insider indie, one to be seen. At its premiere showing in Dortmund, I managed to get one of those really rare pins they had given out in Cannes, showing the back of that famous truck.

The movie came out a year after my leaving cert. My first year in college. Bochum. Abfahrer. Dortmund. We gotta get out of this place. Raus hier. Getting away. Wherever. Leave the mess behind. I won’t be able to change it anyways so why waste my life trying. And there was a world out there to be discovered. Full of beautiful people. Thinking and living along the same lines. Where did it al end?

The Cannes Film Festival is on these day and the German media was commenting on how things on the red carpet were as ‘glamorous’ as always, despite changes in attitudes happening especially in the USA these days – I was going to say ‘right up to the Presidency’, but that would have been wrong. So wrong.

Pádraig had a multi-disciplinary session today with two physios (not including myself:) and an SLT. Pádraig was standing and the SLT was working with him on breathing and production of sound. Together they managed to help Pádraig to make very low but clearly audible sounds. Pádraig also continued on working with straws and drinks, as well as separating better the way he breathes between his nose and his mouth.

We checked and were told we could stay for that week we were supposed to go to Lourdes, Pádraig will have an extra week (except Pentecost Monday) of therapy which is good news – although we’re all still in a bit of a shock following the cancellation of our train by the railway workers on strike in France.

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