I’m always looking for a word as a title for the blog entry. This one was going to be ‘mad’. On second thoughts, I went for ‘far’. Both would have been good. One a bit funnier, the other a bit more positive.

Mad – We’re treating the wrong people. Our problem are the normal! (Irre – Wir behandeln die Falschen. Unser Problem sind die Normalen.) – That’s the title of a best selling book in Germany by doctor, (catholic) theologian, and writer Manfred Lütz.

As I was been listening to German radio today trying to organise the content of our apartment in Hamburg and getting it ready for moving, Lütz was interviewed on radio at the Frankfurt Book Fair. He says that a psychiatric illness manifests itself by a person not being able to change perspective. He says that patients can be helped by focusing on their abilities not on a collection of symptoms. He says, that therapy is all about opening doors and that it is up to the patient to choose the direction of their movement.

He says, that it is the ‘normal’ people who usually cause the trouble. He mentioned economic/corporate criminals, I would add bankers, speculators, politicians, regulators, and car manufacturers. – And while we are at it: there’s plenty of people in and responsible for the health system who find it very difficult to change their perspective…

Trying to get ready to empty the apartment is almost impossible. Where on earth is it all going to go? And while I thought I was looking forward, rather than back, this here is a journey through the last two years. There is peg food, water bottles for the drip, suctioning equipment, oximetres, oxygen equipment, catheter changing gear…. there’s no end to stuff Pádraig doesn’t need anymore because he is now so much better.

How far Pádraig has come since we arrived here almost two years ago! How encouraging is that! What a reason never to give up!

Germany ain’t what it used to be.

The trains are running late, the clocks aren’t showing the right time, and last night, when I was trying to get from the Hauptbahnhof to the hotel, I couldn’t even get out of the main station because police had blocked the exit. Why? – Because Pegida has decided to stage a protest in the Düsseldorf’s city centre every Saturday and every Monday. So this huge police presence was not a once of, it now happens twice a week in Düsseldorf. My guess is that there are probably more police than Pegida “protesters”.

The second day at REHACare was really interesting. Asian participants are not just taking pictures anymore, they are exhibiting and have a really big, visible presence.

And look at this.

Yes: it’s a wheelchair mounted on skies! The second person can stand on the back of the skies and, by pushing down his heels, apply the breaks. If you look closely, there is a line hanging from the back of the seat. This is connected to the ‘driver’ and when he either falls of or pulls it, the emergency breaks go off. – There is a requirement though to do a course over a few days (in an indoor arena in Holland!) to learn how to handle this gadget…

It’s just one example of really brilliant ideas around mobility. There are other engineers who have applied the same idea to bicycles and scooters. Check out this video.

Isn’t it amazing? There is a version of this where a ‘driver’ can stand behind the person sitting and by using a joystick-type of remote control, drive the scooter/wheelchair. This thing is as fast as a small moped!

Over the past two days, and again in the train when someone saw me with all my bags from REHACare, when people asked me what i was doing professionally, I said, for the first time, that I was working with young people with severe acquired brain injury. – First, I thought it was strange. But, really, that’s what I’m doing.

For some reason, I’ve been talking recently to people about what we heard from health officials and senior medics over the past years in relation to the treatment of persons with severe acquired brain injuries, in the USA, Ireland, and Germany. And I think it’s worth looking at them again. Because now, we know much more. We know how Pádraig is doing after two years of good care and therapy.

What we heard and read includes published remarks by the National Clinical Lead for the HSE’s rehabilitation medicine programme in Ireland and former Chair of the Medical Board at the NRH in Dun Laoghaire, in relation to the treatment of patients with a disorder of consciousness, referring to the fact that there are only three beds for these patients in the whole country, leading to a waiting time of a year – when it is widely recognised that immediate intervention and early neuro rehab is necessary:

Playing music to breathing. Slow. Fast. Soothing. Loud.

Playing music to communicate, to connect.

The music therapist is looking for music that Pádraig definitely doesn’t like. My first thought was: anything I like will do in this case.

What do you think? Any suggestions?

Home from the NRH. 8km fast run. Checking into flight. Booking hotel in Düsseldorf. Booking train to Hamburg. No packing bags. Getting up at 5am tomorrow. Like back in the auld days.

 

This morning I went with an OT from the NRH to our house to meet the Community OT and together we had a look at the doors, the passageways, the lifts, the hoist, the bath, the shower, everything.

They liked what they saw.

The plan now is to finish the big jobs this week. The smaller jobs next week. And get Pádraig home for a night to see how this works out.

In two week’s time the NRH OT wants to organise a bit visit and meeting with Pádraig at our house to make sure everything is in place before the discharge.

There is a huge waiting list for the NRH. We’ll have a home for Pádraig and want to get him out.

It’s a no brainer.

Does it wash?

The question can have all sorts of meanings. Depending on whether it has got to do with dirty business or dirty clothes.

In our case, it was dirty clothes.

Because yesterday was the day – wait! – that we were able, for the first time in many weeks, to use our washing machine! For me, this was a sign that things are slowly but surely starting to normalise in the house. It was a very necessary event, that wash, not just because I was running out of socks and other things, but because I need to believe that this dust bowl is going to settle some day soon.

The NRH thing is almost becoming a routine. Going there in the morning. Coming back in the evening. In between asking to be let in and asking to be let out. Asking for someone to take out things from the fridge, asking someone to bring Pádraig’s breakfast, asking why he is only allowed to have half a portion of his dinner. Anyhow, what is ‘half’ a portion? Is that ‘half’ a portion of a meal for an average sized person? Or for a very tall person? As it happens, it is half of what the company preparing the meals decided to shrink wrap.

I really do not want to sound cranky. Really. People working in the NRH are the kindest and most caring people you could come across. When you ask for something, you hardly have to wait. In many cases, you don’t even have to ask. But from where I stand it is difficult. Telling me how much Pádraig is allowed to eat does not make sense. Because…

There are days, when he eats more. There are days when he eats less. For breakfast. For lunch. For dinner. And whether it is more or less does not depend on the opinion of anyone, it depends on his form, on his appetite, and, yes, on the food. He eats more and faster and with more interest if he likes the food.

As it would be in your case, in my case, and, I suspect, in anyone’s case.

Pádraig has a brain injury. But he has been eating for months. More or less. As he prefers. That’s what I call progress!

Finally, this day in two weeks time there will be a few people who will not be able to walk. That is because the will be in the process of recovering from the marathon. Two friends of Pádraig’s, Emily and Cliodhna, have a fundraising site up and “running” – it would be great if you could support them!

PS1: Pádraig still really likes pasta and chocolate and ice-cream and beer.

PS2: Pasta on Sunday. Tortilla Española on Monday. Apple tart tonight and microwave meals. Friends! Wonderful!

“Julian Spain for you”, said Pat to me, “Maria, go on” and caused the biggest smile on Pádraig’s face for some time! – He thought it was so incredibly funny because I had asked at least three times who on earth the two of them were talking about. Julian de Spáinn? Julian who?? – Of course, EVERYBODY knows Julian de Spáinn! That is: except me poor eejit! (Well, he *is* the Secretary General of Conradh na Gaeilge after all. I had to google him though.)

That was a really great moment. Because that was him there.

Another great moment (which I missed) was when his physio asked him to lift his arm twice. She asked him just once. And he lifted him twice. You might think its not a big deal, but think about it! – Definitely another first!

So, what’s our day like?

I try to leave the house at 9am to get to the NRH for around 10am by which time Pádraig has been washed and dressed. I give him his breakfast, then there are therapies or just time to talk, lunch just after noon, more therapies or time to go for a short walk and get a bit of fresh air. Pat arrives in the afternoon and the idea is that I make my way home then and do a bit of work here (‘dust bowl attack’).

Sounds good.

In theory.

In practice it hasn’t worked like this yet. Not one day. Yet.

You will have noticed that I haven’t posted any more pictures of the extension and our kitchen. I also haven’t posted any more links to German songs. And, I haven’t highlighted any strange things I came across in hospitals or on my way to one.

The main reason for this is that the past few weeks have been very tiring. It’s funny: each time I think it couldn’t get any worse in terms of running out of time or of getting tired – someone somewhere turn it up a notch. Just to teach me a lesson.

Although – I am convinced that uncertainty, improvisation, lack of routine, all of this is coming to an end. A few more weeks, and Pádraig will be with us in Iona Road.

That day will just be unbelievable. I know that arriving in Rosslare just about two weeks ago was incredible. Coming back to the house to stay with us will be at least equally fantastic.

I don’t want to exaggerate but the last two years of Pádraig’s life have been and incredible demonstration of persistence, proof that you can achieve almost anything if you put your mind to it, and a source of love so great that it swept away any obstacles put in his way.

And this is true also for the NRH. We are just learning about and finding out how much people are prepared to go out of their way to help Pádraig and us to make our new life together possible. An Saol. Dream boaters.

 

I have the feeling this will be the most unspectacular post of posts.

Weekends are so quiet in the NRH. What if – An Saol organised seminars and workshops, together with the NRH, in the NRH, using facilities that are second to none in the country but unused over the weekend? Do you think the NRH might be interested?

Weekends are time for visits and easy going. Two good friends came out today. Pádraig had met them first in Beaumont where they were visiting their daughter. It was really good to see them again and it was so nice of them to come in and visit.

Pádraig is back eating almost as before, with two warm meals during the day and a good cereal-based breakfast. The only thing that is missing is the ‘pushing out the boat’ a bit food. What he is getting is all pureed and I’m sure he could do ‘better’ than that. Maybe that will change next week.

One constant we had heard about the NRH was that families were always pushing for more time. They wanted their son or daughter to stay here for longer than the allocated three months – which does make sense in many ways. In our case, I cannot wait for the discharge day to arrive. To get Pádraig home home with the support and therapies he will need.

We’ve been here for almost two weeks and I suppose that all the information that had to be compiled will have been compiled and passed on the HSE by now.

Next week, I’ll go to RehaCare in Düsseldorf where I hope to meet our friends from Pforzheim and where I will check out ‘stuff’ for Pádraig and for An Saol. I’ll also spend a few days in Hamburg starting to clean out the apartment…

Pádraig’s second concert is lined up. This time, it won’t be a nice, dry in-house venue like the one for Kodaline in December. It’ll be in the magnificent settings of Newbridge House, Donabate, County Dublin. It’ll be RAVELÓID on 10-12 June 2016. Apparently, Pádraig was ‘involved’ in discussions some years ago about the possibility of organising this.

Now, he’ll be joining the first edition of what sounds like a magnificent fest!

On a different note…

What was I expecting? What did I think – how would my life be in 30 years?

‘All along the Watchtower’, ‘Coming into Los Angeles’, and ‘Heute hier, morgen dort’ made up my standard set and on this day, 30 years ago, I didn’t remember the lyrics of any of them. So I left the party with Klaus and went for a walk to see whether together, we could come up with the three verses of ‘All along the Watchtower’.

No. There were no smartphones. There was no web. It was up to us to remember. We eventually did. But it took a while.

In the meantime, there was a bit of a panic. Several search parties had been dispatched to look for the groom. My newly wedded wife had started to wonder whether she had made a bad mistake.

(I don’t think she ever stopped. Wondering:)

If you know the song I finally ‘performed’ at my wedding – pressured by my family and friends – you’ll know that it starts with “There must be some way out of here…”.

This year, when we thought about what to do for the occasion we thought we might go to Spain for a long weekend for our anniversary. It’s where we met 36 years ago. It’s where we went to live for almost a year, the day after the wedding.

We didn’t.

Our lives changed beyond recognition since that day, 30 years ago. We moved house several times. We had three kids. Careers. And then it changed again when we least expected it.

Sometimes, change can cause a lot of strain on a relationship, to a point when it can’t sustain the pressure anymore.

Sometimes, a relationship grows under pressure.

Little of what I expected actually happened over the past 30/36 years. But I know that I was never as right as that day when I said ‘yes’.

(It was pure luck that Pat did too (say yes)! That was before the party piece, remember…)

Tonight, we’re in a quiet place in Wicklow. And get ready for the next 30 years.

PS: Tonight’s post is post no. 700

The assessment is continuing.

How much is Pádraig able to move.

How much is Pádraig able to drink and to eat.

How long are his lower and upper legs, his feet, how wide are his shoulders.

It all is quite complex and complicated, and it takes hours. Once all this data will have been compiled, it’ll go into the care and therapy plan.

Next week, two OTs will visit our house and check out Pádraig’s new room to see whether it’s appropriate. Their report will also go into the care and therapy plan.

I expect to get a big folder with all reports when Pádraig will be discharged to his home. With the determined support of the health authority, the HSE – I expect.

The man himself is eating like a horse and gets better at drinking every day. He has travelled across Europe, spent six weeks in what I would call a ‘bootcamp’ and is ready to live his life. We are ready to help him with that as much as we can.

Pat and I went out tonight to have a nice meal because we couldn’t get a table for tomorrow in this almost too fancy Dublin restaurant. So we’ll go out to Enniskerry tomorrow, have dinner again, and stay in one of the longest established hotels there, a bit more down to earth. To celebrate life together. Looking forward. Not back (because when we do look back I find it impossible not to cry). Forward is the way. New will be the memories.

And if you thought the trip to Alaska was just a pipe dream – you probably thought that Germany would beat Ireland.

By the way, the staff in the NRH were incredibly understanding today. They offered me free coffee. Tissues. All to help me getting over this terrible match last night. – They got it all wrong. That goal was the best thing ever to happen! And one day they will understand why that is so.