There are different layers of life. They’re always there. There’re layers I experience more than others. Some are happy, some are terribly sad, some make me laugh, some make me cry, some are full of hope, some feel as if I was falling down an abyss.

There are layers I never knew existed.

I remember one day, shortly after our return from Cape Cod to Dublin, when I was unable to even imagine a future. That day, a good friend (I never knew I had) told me that I had to hang in there. That – although I’d not believe her then – this terrible pain would become bearable. It would not go away, but I would be able to deal with it. That I would find a way, that life would find a way for me, for my family, to continue, in a different way, but that it would continue.

There are many mansions in my father’s house.

One of the aspects of life here is that we are in the company of many people with different types of disabilities. Many young people here had accidents. Most of them many years ago. As drivers of cars or motorcyclists. Some have made dramatic improvements. We talk to each other, get to know the patients and their families, the different ways they deal with their new life. An Saol Nua.

In less than three weeks, we will leave all of this here behind. The routine, the people, the place.

What will it be like to walk down Iona Road, O’Connell Street, Harcourt Street, to be in Leitrim? To go shopping, to go to concerts, to go to museums, to sessions? To peel off the layers? No restrictions. But a constant and desperate fight not to give in, to focus on the positive, to stay together, to resist all sorts of pressures, to remain calm (mostly) and reasonable (possibly), to love (always).

The BBC showed a documentary last night about a young snowboarder who recovered after a bad accident. Today, someone had uploaded it to youtube and you can watch it here: Me and My New Brain.

Tonight, in a press statement, Angela Merkel said that we were quick to rescue the banks and that we must now be equally quick to addresss the refugee crisis.

Wir wissen, dass wir schnell waren, als es darum ging, Banken zu retten. Und ich finde, wir müssen jetzt genauso schnell sein, wenn es darum geht, die notwendigen Maßnahmen zu treffen, damit Kommunen und Länder entlastet werden und die richtigen Rahmenbedingungen bekommen, um diese Herausforderung zu bewältigen. (http://www.bundesregierung.de/Content/DE/Mitschrift/Pressekonferenzen/2015/09/2015-09-07-merkel-gabriel.html)

We looked at the regular ferries to Ireland and it seems that the direct connection from France to Dublin is booked out on the day in question.

Now, we’re looking at the ferries to Rosslare. It is really hard to believe that there are only three weeks left.

There are still a few details to be sorted out, but so far all’s looking good.

At home, work is progressing on the extension with tiles being put in and even paint being selected.

Pádraig’s overall condition continues to improve. Today, the therapists got really excited when he managed to stand with very little support around his legs and hips. When they asked him, he lifted up his right arm, and then his left arm to help them with the exercises. He had done this before but never in a therapy session! In the morning, his speech therapist brought in a ‘yes’ button for his right hand, and a ‘no’ button for his left hand. Although communication was a bit difficult because of all the background noise in the ‘bistro’, he pressed the correct button several times. Tomorrow, we will try the same exercise in her office. These buttons can be programmed to ‘say’ what you want them to say, not just ‘yes’ or ‘no’. If Pádraig managed to use them correctly, it would open new doors for him to communicate.

What kind of short sentence, would you think, Pádraig might want to say to people?

Three down, three to go.

It’s half time in Pforzheim for us.

In three weeks’ time, we hope to be on our way to Dublin.

Actually, writing this makes me a tiny bit nervous. We have no tickets, we have just an outline plan, and we have a trillion things to organise around that trip and its implications.

Pádraig has no worries about any of this stuff. I think he is very happy here with his training regime that is really challenging him, in a good and very positive way. Pat brought his iPod and asked him today, whether he would like to listen to some music.

You know, sometimes you have to be a bit patient and ask him to answer ‘yes’ or ‘no’ by moving his tongue to the right or to the left.

There was none of that in this case. His tongue shot to the right. It just reminded us how important music has always been in Pádraig’s life. First thing he did when he stormed into the kitchen was changing the channel. He was listening to music constantly always on the look-out for something new and exciting.

To be perfectly honest, at the time I didn’t always appreciate it. I had my own preferences and, stupid me (because I had no chance of winning, ever), at times I entered into a competition with him on which music we were going to listen to. What I would not give today, to have him playing his music to me.

Seeing him being able to enjoy a film or music, even just from an iPod, is brilliant. Although he is never by himself, it must feel to terribly lonely where he is, not being able to fully communicate with us.

This weekend apparently marks the end of the festival season in Ireland.

But there are concerts going on all the time.

And there won’t be no stopping him to join the concerts of his favourite bands, and of new bands, and to get ready for the 2016 festival season!

Saturday is rest day.

Since the hills of Pforzheim don’t scare us anymore we decided to walk down the 2km to the river Enz and then another 1km along the river to the city’s gasometer (similar to the one in Dublin and many other cities) to visit Rome as created by the German artist Yadegar Asisi.

Pádraig got in free, but the general entry fee is 11 euro. And it has been so successful that apparently they extended the show by 2 months. I just couldn’t imagine this to work in Dublin for some reason. But maybe I’m wrong.

Inside, it’s a 360o screen around the inside walls of the former gasworks showing Rome in 312AD. To make the experience more real, there are sounds from people talking to workmen working to dogs barking. Day changes into night and the sounds of the city change with it. In the middle of the gasworks is a tower 15m high with a wheelchair-friendly elevator that allows you to see the city from different levels and angles.

It was fabulous, only that when we walked back up the 2km of hills of Pforzheim to the apartment, today turned out to be only half-a-rest day.

While we were walking, I thought about the 360o vision.

It’s the opposite to tunnel vision which is: restricted, exclusive, partial. 360o vision takes in all the different aspects of life: it’s inclusive, wide open, diverse.

I had to think of doctors with tunnel vision who talk about people with certain injuries not being worth of treatment, claiming they offered a bad return on investment.

I had to think about health systems reacting to political pressure and not to the needs of people in desperate need of treatment.

I had to think of insurance companies paying small claims but keeping open back doors when their clients really need them to honour their commitment.

I had to think of policemen looking out for the interest of perpetrators and not that of victims because one is closer to them than the other.

They all would benefit of a 360o perspective and wider, more inclusive and balanced vision. Opening up their minds to look out for, listen to, and perceive a world that is much more complex and diverse than their tunnel vision would suggest to them.

I had to think of a Dreamboater at the helm. How different our world would be. Wouldn’t you agree?

I got one of those gadgets you stick into a TV and, Abracadabra, you can cast your favourite films and shows from the internet to your telly. Unfortunately, Lidl closes at 8 pm, so I missed a good part of the film when I went out to get us some dinner.

But the best part of the film, In Bruges, was the beginning. And I didn’t miss that.

You need to know that this is one of Pádraig’s all time favourites. It’s a classic. I think he knows most of the lines.

As soon as the film started, we were watching Pádraig’s face, rather than the movie. You should have seen it. A huge huge smile from one ear to the other. Pure happiness. There was no doubt that he was following the movie. Listening to it. Watching it. Imagine that: watching a movie! And immensely enjoying it. Enjoying it! Abracadabra.

Today, Pádraig didn’t walk across the room. Instead, he walked the full length of it, including a bend. He started to try and move his legs forward himself, didn’t quite manage it, but he did try, there was definite movement.

This week, he was mainly ‘trained’ by one of the owners of the therapy centre. If proof was needed that routine makes you lazy, laid back and risk averse, and that, on the other hand, pushing boundaries, stepping out of your comfort zone, peeling off the onion layers

When he was standing, with his hands and arms up on a support table, his knees and hip didn’t slip or collapse anymore, he was able to keep them straight with very little support. Yes, I had to hold his head and he had the support from his arms, but hey – he showed us that he was definitely getting better at this standing business.

It’s the end of the third week of our stay in Pforzheim and time is flying. The days are so full and we are all so exhausted in the evening that we don’t really feel the time. It’s mind boggling.

Every family has some stories they repeat again and again. They become some kind of family folklore. One of ours is that one day one of our kids (I won’t say who it was) asked for something – and we were prepared to hand it over. But – we wanted to hear the magic word first. And we got it. You know the one. Yes.

Abracadabra.

Just ‘lost’ today’s post…)

All well.

More details tomorrow!

It’s no news anymore that Pádraig keeps 3-4 therapists sweating it out while they walk with him across the room. It’s really fantastic and crazy what has now almost become a daily routine. And everybody is getting better at it every day, including Pádraig.

What is news is what the lady running the centre with her husband – she is also Pádraig’s lead therapist this week – showed and explained to me and Pádraig today.

There are a huge amount of activities I had been thinking of doing with Pádraig without knowing exactly how to do them. They involved different senses and different cognitive activities and challenges.

The incredible thing is that all the equipment for any activity you could think of exists already. While I had found it impossible to find them on the internet, loads of them are in this lady’s office!

There are little bottles with different smells in them: from lavender to lemon to the sea! The little bottles come with cards associated with the smells. And there are endless possibilities to work with both.

There are little boxes with different items in them that make different sounds when you shake them, from nails, to rice, to peas and paper clips. Again, there are countless ways of using these to stimulate and train cognitive abilities.

There are buttons of different colours that make different sounds when you press them. All of a sudden, the movement of a finger or a whole hand provokes an effect! How motivating is that for someone who could not make any ‘impact’ on their environs at all!?

There are cards you can use to make up your own calendar. Just pick the day of the week, the day, month, and year.

The last thing she tried was to see whether Pádraig could write. She took his hand, put a pen into his hand and helped him to write his name. What’s the big deal, you might ask…. I guess it’s nostalgic!

Tomorrow, we’ll have a look, hopefully, at a special computer programme that can be used to test and train a whole wide range of cognitive abilities. Can’t wait!

Today is a special day.

But then – so have been many others before over the past two years and a bit.

I am sitting on a chair with my feet up on a bed, one of those anti-mosquito candles flickering beside me, listening to Pádraig’s breathing in the next room.

There were so many important things I had planned to do today and I didn’t do half of them. But I spent the whole day with Pádraig doing truly mind-blowing things. From the daily routine of getting him  ready to go to the Rehab Centre just 50m down the road for 8 am, to my ‘assistant’ routine during the amazing therapies – again, helping him to ‘walk’ across the room, and getting him ready for bed.

I had a long conversation with a doctor who is very active in getting public attention denouncing misconduct in health care in Germany, publishing widely and having a strong presence in the media. He said that, in a round-about way, Pádraig’s case was God-sent to highlight the many different things that do happen but should not happen to people requiring specialised and urgent care and therapy.

Today is also the first day of my carer’s leave. For at least a year, I am not going to work in my ‘day job’ and I also won’t get paid. It’ll be interesting to see how this will work out.

 

Have you ever met people who are doing things no one in their right mind would be doing because they don’t make ‘sense’?

Apparently, what makes sense is to spend your money wisely. In the health system, you don’t spend money on people if they don’t get better. You don’t waste your precious resources on patients who either don’t have a lobby or who you cannot heal or where the outcome is, at best doubtful.

Apparently, what makes sense is for 1,000 young people with disabilities to be looked after in nursing homes, as reported by The Irish Times just 10 days ago. That almost none of the nursing homes in Ireland does comply with current standards is neither here nor there.

Apparently, what makes sense is to be realistic, to face the facts, to be sensible.

Today, Pádraig walked, on his own feet, across a room.

No. This was not a late Lourdes miracle. Pádraig had the help of four therapists and myself.

Two therapists were holding and moving his legs. One was holding him from behind changing his weight from the left to the right foot. One was standing by. I was pushing him back a little so he wouldn’t fall to the front.

Can you imagine what it must have felt like for Pádraig? To be not just standing, but moving on his own feet, his own legs? To do this after more than two years being absolutely and completely dependent on other people for everything he needs or wants?

Doing this today did not make sense at all. No one in their right mind would have done this. Why on earth would you get involved in something as uncertain, strenuous, and risky?

But it was brilliant. The people who did this with Pádraig today would never take no for an answer. They would not be very sensible and realistic. They are much more like Pádraig than they would know.

Also found an online shop for electronic aids at inca.de. They’re based in Pforzheim. Might contact them over the next few days.

Nothing behind me, everything ahead of me, as is ever so on the road.

Jack Kerouac, On the Road

When I ran my first marathon, I had this out-of-body experience over the last few kilometres. I was watching myself in my misery because I could not stand it anymore in my body. (No, I haven’t sought psychiatric advice on this.)

Since this was my first marathon, I decided that I was going to try harder, get better at it. I made a deal with Pádraig: if he kept trying, so would I. And together, we would make it.

The Dublin Marathon is coming up soon. So there was no choice this morning but to get up early. It was going to be 34 degrees today and I had to do 24 km. I ran along the “famous” river Enz and discovered that Pforzheim has really beautiful parts. When I finished, I drank 2 litres of water and spent half an hour under the shower trying to bring down my body temperature. I read that humans developed over millennia to run long distances. I have (am) proof that evolution makes exceptions….

It got as hot as the forecast had announced. This afternoon, we decided to go down to the Oezle Wine Fest to escape the heat up in the apartment and to have a cool beer – just to be told that if you want a cool beer, even on a hot day, you have to go to a beer fest.

Getting into town in Pforzheim is the easy part. Getting back up to the Rehab Centre pushing a wheelchair is hard, especially on a hot day like today. But is was all worth it. Pádraig really enjoyed escaping the heat, listening to the traditional music and watching people in funny dresses passing by. It was a different kind of day, no therapies, just hot and lazy.

Tomorrow will be the beginning of week three here. Four more weeks and we’ll hopefully be on the road… everything ahead of us…