Experience

Here is Pádraig walking. (The video is not great because the person trying to record it, recorded it by accident moving really fast. I had to slow down the playback speed which interfered with the quality of the recording.)

I have started to read Pádraig short stories in the evening. I experienced this during our journey to Lourdes and felt it was a brilliant way to finish the day. I looked for short stories on the internet and found a few websites that got me going.

On one of those sites they also had proverbs and aphorisms. There was one Chinese proverb that reminded me of my final pedagogy exams in college which were all about how to engage students not by telling them about whatever you wanted to teach them, not by showing them, but by involving them. This Chines proverb was in German, here is my English translation: If you want to find out about something, ask someone with experience, not a scholar.

Just by coincidence, this proverb also reflects what the co-owner of the rehab centre told me today with incredible passion, i.e. that there is very little recent scientific research into how to successfully treat severe acquired brain injury. To be fair to her: she said there is none. She said that this is the case because ‘scientist’ working with very well defined ‘experiments’ can not establish the conditions under which independent, repeatable and measurable ‘experiments’ or observations can be made in relation to that treatment. This is what the scholars have told her, the practitioner.

She knows what needs to be done to support the recovery of sABI survivors. I know what Pádraig needs. Maybe not all of what he needs, but I have a pretty clear picture. I have almost four years of experience of him being treated, of seeing how others like hime respond to certain types of treatment.

For example, today we walked Pádraig across the full length of the therapy room with me supporting him on his back and the main therapist supporting his knees and moving his feet. It was the smoothest thing ever. We could not have done this without Pádraig’s support. We tried but could not have done this late last year. – This is experience. How would you ‘measure’ in a ‘pure science’-type experimental setup?

According to what I heard today it seems as if we needed to find new ways of capturing progress made by survivors in order to proof that therapy is essential to recovery. Would common sense be to ‘common’ and not sufficiently ‘scientific’? Should we establish what is going on with those who are having the experience rather than with those who think they understand because the studied?

60

Something happened on the recent trip to Lourdes I hadn’t mentioned yet. For the first time in my entire life, someone who wanted to know my age and who I asked to guess said: around 60. Can you believe it? How wrong can you get this??!!

I had to think about this today, as I realised that over the past few weeks, I’ve saved the Irish tax payer, more precisely the HSE, thousands of euro by doing the work of the four PAs who are usually helping Pádraig, never mind doing the work of several therapists. Not out of choice. When I asked the HSE about paying PAs in Germany, they started to look into this possibility and, as far as I am aware, they are still doing it.

Pádraig and I visited a friend’s house this afternoon here in Pforzheim which was great because it took us out of the therapy environment dominating our days. For a few hours we talked about anything but brain injury, rehabilitation, and An Saol. As if life was ‘un-injured’. Pádraig had cold drinks and a huge home made strawberry ice-cream, and didn’t cough even once. He tried so hard that he managed it all perfectly.

I’ve decided to follow Pádraig’s example to defy the laws of physics, chemistry, biology and whatever else, as Pádraig a true dreamboater, and that I will be strong, fit and confident – most of the time:) – as he is.

Even when I’ll be 60 one day (in the distant future) or even older!

 

Sonnenklar

I’m listening to Richie Havens’ High Flying Bird on Spotify (check out the really amazing camera work and moving shadow on the recording). One of the heroes of Woodstock on the media that is the anti-thesis to what Woodstock stood for! I’m sitting in a big attic, on my own. Pádraig is asleep downstairs after a busy day. We will have a few days on our own until Thursday.

Over the past few weeks I’ve felt like imploding and exploding. Sometimes simultaneously. Imploding out of helplessness, exploding out of impatience with a world that really doesn’t get it at times.

None of it makes sense: neither should I feel helpless, nor frustrated about what is, as I would say in German: “Sonnenklar”, as clear as mud.

There is hope though!

Early this morning, I received first an email from the mayor of Bad Herrenalp and then from the CEO of the Gartenschau. Both apologised for the trouble we had yesterday and hoped we still had had a great day at the show. They also asked for my account number and said they’d transfer the 13 euro they had charged for the person accompanying Pádraig to my account.

If the Germans can change… ?!

PS: Just came across what must be the coolest (though not the best:) version of my favourite song, All Along the Watchtower, by the Allman Brothers. Pure Soul, as one comment says.

Bad Herrenalb

I bet you’d never have thought to travel from Bad Herrenalb to South America using public transport. I bet you wouldn’t have thought it was possible. I bet the vast majority of you haven’t got a clue of where in the world Bad Herrenalb is!

Fact is: Bad Herrenalb is a spa in the Black Forest and it does have a train station from where it’s perfectly safe and possible to travel to Frankfurt airport via Karlsruhe – as I learned from our friends today, when we visited them today, yes, you guessed it correctly: in Bad Herrenalb.

Bad Herrenalb’s claim to fame this year is the Gartenschau it is hosting: there are concerts, talks, loads of flowers, a little stream, and a few stands where you can get something to eat and drink. We had a great time walking around, catching up on each other’s lives. It was a great afternoon out, away from our routine, being with friends, enjoying life, good company and fresh air.

We had a bit of a frank discussion with the event organisers at the end of our visit to the garden show. Turns out that people who have an ID showing that they are disabled and need a person to assist them can bring in that person for free. The three of us had to pay 37 euro entrance fee for the afternoon, which is not exactly cheap for a walk in a park, when one of us should have been able to go in for free accompanying Pádraig, bringing the entrance fee down to 24 euro. Turns out that this reduction only applies to persons with a disability ID card showing the letter ‘B’ for ‘Begetter’ or companion. Now, there are two obvious things to note here: one is that it only works for Germans with a German disability card; the other one is that there is no doubt in anybody’s mind that Pádraig is disabled and does require assistance. But – Germans being Germans, and the organisers of the garden show being who they are, they were unable to apply common sense – but followed orders: no card, no free ticket. No matter what. A piece of paper effectively overwriting reality. Unreal, isn’t it?

Licht aus – Spot an!

If you’re not German you won’t ever have heard of Ilja Richter. And if you are German and under 50 you also probably won’t ever have heard of Ilja and his legendary introduction to the acts he presented on his weekly Disco show on German TV in the 70s and early 80s. “Schönen guten Abend, meine Damen und Herren. Hallo Freunde!” followed by “Licht aus – Spot an”, lights off – spot light on!

You couldn’t make it up. Neither Ilja, nor his show. They were both, quite unbelievable. Watching them now, they were pretty brilliant, in a kinda funny way.

Someone mentioned the intro today saying that it really encapsulates many important aspects of what one should do at certain times: filtering everything out, getting rid of all the noise surrounding us, and putting the spot light on what is the important act of the evening – in short, not getting lost in a sea of details, not being distracted left right and centre by side-stories, but to focus on the one thing that makes or will make the difference.

What is the one, the most important thing today for you? What is it for me? What is it for us collectively?

Today, the therapy centre had invited me to attend a one-day training session on eye problems following a trauma or other neurological problem or illness. It has been some time since I’d been in such a learning environment and found it excellent.

It made me think that there are physios, OTs, SLTs, and MTs – but no-one who would explore the different senses: taste, touch, or smells. And while there are eye-tests, there doesn’t seem to be much of an emphasis on doing anything with the results. There is something called ‘eye training”, but there don’t seem to be any trainers or therapists available for it.

Retro

Looking out the back of the train, seeing the tracks disappear behind us. Swinging to the left with a short view of doors you can open whenever you want, as well as a hand washbasin that is an ingenious work of solid engineering.

As moments faint into the past, there are values that stay with us.

Return

When we left the train in Karlsruhe today, our friends who were going up further North were waving and shouting ‘Auf Wiedersehen bis zum nächsten Jahr!’. Pádraig surprised everybody by lifting up his left arm, his left hand, his fingers and waived at the people and the train as it was pulling out of the station.

Below are a few pictures from shops in Lourdes. Like a lot on this journey, the items sold in the shops are very different from what you would encounter in you day-to-day life. Mints made with ‘Lourdes water’ (that way you can keep Lourdes water in your hand luggage in case you were flying), balls filled with water and snow and glow-in-the-dark statues, bottle openers and cork screws with pictures of Mary, little bottles that look like mini-Guinness bottles ready to be filled with Lourdes-water.

And then the journey back, the return to what life outside of Lourdes is like on a train that must have made this journey regularly for the past 60 years.

Traveling with people who could not have been nicer. His personal assistants and helpers over the past week, one who had been with Pádraig for the third year running, the other one looking after Pádraig for the first time. He started to teach Pádraig morse code on the way back. Imagine Pádraig communicating with us with his bleeper using morse code…

About to go to bed and get ready for another really early start tomorrow morning. And then the weekend to recover from what has been a very intense, tiring and moving week.

I’ve been thinking about what this journey means to me. What it might mean for Pádraig. What it means to the many disabled, sick and injured people for whom this week might have been the only week in the year they’re leaving the ‘home’ they’re living in.

Candle

There are candle-lit processions. There are hundreds of candles burning around the clock lit for the intentions of loved ones. There is the option to get a candle set up online if you can’t be there in person. There is something magic around candles, their warm light, the smell, the flicker.

Pádraig lit a couple of candles today he had been given as a present by a really nice lady who had lost her son in a traffic accident some years ago. He lit one for her intentions and in memory of her son. The second one was for the Dreamboat, its crew and passengers – all the people who believe that you need to go for what you believe in, and that you can achieve whatever you believe in if you make the necessary effort.

As this train speeds through the marvellous South of France in this warm summer’s night, with the windows wide open and the fresh air loaded with the incredible smells from the mediterranean mixed with the scent of wild flowers and gras clearing the wasted air inside from the inside of this very special midnight train, it’s probably a bit too early to take stock of the past few days.

One thought so that struck a note with me came up in the sermon at our last mass together this morning: if we were to bring one thing back with us from Lourdes, could it be the realisation that we are here for a reason – otherwise we would not be around. Could this reason be that we all had a mission in life, no matter how ‘big’ or ‘small’, how ‘complex’ or ‘simple’? The request was to take that mission and work on its realisation.

My ‘mission’ in life has never been as clear to me as today. – What’s yours?

Lights

It’s very late again, with an extremely early start tomorrow to catch the train back to Germany.

The father of one of Pádraig’s friends visited Pádraig and us today. He is working as a volunteer in the hospitalité. It was really nice of him to make the effort and to come to see Pádraig.

Can’t believe our time in Lourdes will be over tomorrow!

Forty Winks in the Sun

Off to Saint Savin! It’s a tiny village in the mountains with an ancient 900 year-old Romanesque Church and spectacular view into the valley and the surrounding mountains.We left early, had mass and then had a long, really pleasant break in a small green behind the church. Pádraig took the opportunity to have Forty Winks in the Sun! Yes, the sun came out today after days and days of rain and cold.

When we arrived back in Lourdes, we had an other group picture taken on the roof top of the Accueil by an incredibly stressed out photographer who really struggled to organise all those wheelchair users and their helpers into a space that was very tight – even considering that he was standing dangerously high up on a ladder.

This afternoon, and for the first time as far as I know, there were security checks at the entrance to the sanctuary with people having to open their bags so they could be checked for weapons and explosives. There are also very large blocks of concrete placed in front of the entrance to stop suicide drivers.

The world’s gone crazy.

But none of that really bothered us today. We’ll remember those Forty Winks in the Sun, pure pleasure!