I am sitting in the dark. Just the laptop screen is bringing some light to the room. Small lights on the keyboard help me to find the letters as I am typing. The windows are wide open to let in some air.

You want it darker. 

If you are the dealer, I’m out of the game
If you are the healer, it means I’m broken and lame
If thine is the glory then mine must be the shame
You want it darker
We kill the flame

Lyrics mean different things to different people and in different circumstances. Listening tonight, as I am sitting in the dark, to You want it darker by Leonard Cohen, the quintessential minimalistic song, reflects my mood tonight. And it carries some peace that is stunning. You want it darker. We kill the flame.

There’s a lover in the story
But the story’s still the same
There’s a lullaby for suffering
And a paradox to blame

Cohen wrote and recorded this song when death was close. The time when you accept things as they are. Even if they are not quite as you wish them to be.

To “be ready”, to be able to say “hineni” is, I feel, one of the highest achievements for anybody. Not only when death is near, but even more so when you are totally focused on life. There’s no more chasing, no more hatred, no more disappointed. All this is substituted by the acceptance that “the story is still the same“, no matter what.

No matter what.

It’ll be our last day here tomorrow. A short day: one hour physio, one hour lokomat, one hour SLT. An hour or two driving.  Two hours flying. 15 minutes home.

I feel stronger than before. I’m sure Pádraig feels stronger. Physically and mentally. The road will be long and winding, but we have the strength to travel it. We’ll be on top of the wave and there will be times when we’ll be out of the game, when we’ll be broken and lame. But it won’t make a difference. Because we’re ready. Ready to take on this journey together. And along the way we’ll have fund and enjoy the moments of laughter, humour, love and tenderness. As well as sitting in the dark. Listening to the most brilliant verse, voice and music you could imagine.

Here we are. We are present. Hineni.

Our stay in Pforzheim is coming to an end and Pádraig is doing well, demonstrating to his therapists how determined he is to make progress and what that progress looks like for him. During his SLT session to today, he did not only continue to use a straw to drink (still very small sips nut nonetheless…) he also managed to control the different muscles controlling facial expressions much better. He is working hard to produce sound, controlling his breath, making slow but steady progress. For the first time, we seem to manage to walk with Pádraig ourselves, me holding him from the back and someone else helping Pádraig to control his legs. It would be really good if we could walk with him when we are back in Dublin, even for a few minutes every day.

Tomorrow will be a ‘holy day’ here, Corpus Christi. Businesses and shops will be closed. Some therapists will work, but the programme will be reduced. We’ll have a short programme on Friday as we will have to leave at around noon to get to the airport in time.

Time to reflect on our stay here. And on our return to Dublin.

We all had a brilliant early bird dinner together in one of Dublin’s finest restaurants, tonight five years ago. When we left the restaurant, there was a seagull in front of one of the houses on this beautiful Georgian square, with a few small twigs in her beak. Almost tame. Not flying but walking up and down some steps in front of one of these really old houses. We didn’t know then. But it was the call of seagulls that would follow us for the next few years and remind us of this night that we had spent together as a really happy family. Trying to make as think what could have been. What should have been.

It’s Pádraig’s birthday today, as it was this day five years ago.

Five years ago, he had just finished college and was going to spend the next three months in the Boston area on a J1. That night, we were not just celebrating his birthday but also marking the beginning of the summer that would bring him to the USA and us to Germany. It was our last evening together before we were all going to go off in different directions.

It is hard to remember and think of the joy that we felt when he was born 28 years ago. When the memory of that night just five years ago is so strong and, at the same time, so incredibly sad.

It makes me think that it is good not to know what life holds for us. It would be unbearable.

Today, was a rollercoaster of a day. So sad looking back. So happy being here with him, eating the cake he had chosen, getting a bag full of birthday cards. Blowing out his birthday candle.

 

Pádraig had his first of a serious of ‘parties’ to mark his birthday and his incredible determination to live his life with energy, positivity, and fun. As we all should, really. Some of his German family was here to join us for lunch and ‘Kaffee und Kuchen’ with his first presents – there will be more when he’ll get back home this Friday. And then there will be a big and very special birthday party in the Club of Conradh na Gaeilge on Harcourt Street on 9 June.

There was a huge “Happy Birthday” banner in the therapy centre. There were people singing a range of different birthday songs in different languages almost non-stop. It was so nice and so good to see how many people were wishing him well.

Birthdays are funny days. No matter what the circumstances. No matter what the age. One thing is certain, for me, at least: they are the perfect occasion to practice that wise way of living in the moment and seizing the day. Looking back doesn’t change anything. Planning the future is usually pretty futile. Speculating what could have been or, worse, should have been, is definitely not helpful for a healthy mind.

Even if those ubiqutous seagulls keep trying to make me think that way.

There are Drive Through burger joints. There are Drive Through banks. All those places that are so new and modern and that make it easy for drivers of cars to do whatever they need to do without getting out their care.

Though, honestly, have you ever seen an Autofahrerbriefkasten? How far can you go to make life easier?

The angle I took the picture from isn’t great and it is a real ‘snap’ because I quickly wanted to capture something that I hadn’t seen before.

We, as well as a few doctors and therapists, have been speculating about Pádraig’s eyes for quite some time now.

What we know is that he can see with both eyes though it seems that his sight is slightly better in one eye than in the other eye. We know that often he seems to have his eyes closed making people think that he is asleep when, in fact, he is just relaxing his eyes, or he might be concentrating on something that doesn’t require his eyes to be open. Having his eyes closed doesn’t mean he is asleep.

He rarely opens both of his eyes. We have asked him why and we have consulted with doctors. There is a ‘view’ saying that because his eyes are not aligned (following the accident and operations) he might have double vision when he opens both eyes at the same time. And that this is the reason he keeps one of his eyes closed most of the time, and he just opens one of his eye — usually the left eye.

Today, for a while, and for the first time, he switched eyes. He kept his left eye closed and he opened his right eye. When I asked him he said that he could see ok with his right eye.

I had to think about those strokes with the ice across various muscles in his face over the past week and a half during his SLT sessions, and was wondering whether they were having an effect!

Loads of people went out to Dublin Castle today to watch the count, apparently. One women was handing out After Eights. You have to give it to her. No matter what side of that referendum you were on. That was a really good idea. You wonder why it took someone so long to come up with it.

Pat and I went out with a friend to have dinner and a drink by the river. We had a great night out, with someone staying with Pádraig. To talk, listen, get feed-back is a welcome break from the routine.

And before we went out this evening, we had a brilliant afternoon with two other friends and their three children. We even met three really nice Christian evangelists in the street who asked whether they could pray for Pádraig. They said that they had just prayed for a lady with back-aches. They repeated their prayer three and the aches and pains had disappeared completely. I must say that a lot of this is about expectation management. When they asked Pádraig whether he had noticed a change after the prayer, he very clear said ‘No’. An honest answer. But not the one expected!

We were walking back to the apartment just after lunch, the time when many people at the therapy centre were getting ready to go home for the weekend. There is one young person who has the coolest car I have ever seen. It’s black, it’s snazzy, it’s really shiny, it looks like a perfect drive for the no-speed-limit German autobahn, and it has a build-in robot that opens the door of the boot, reaches out to pick up the wheelchair standing beside the car where it was left by the driver, and softly deposits it into the boot, before closing it again. It’s almost unreal. And the best thing: just looking at the car, you wouldn’t have a clue of its sophistication – something the driver pointed out was really important. It was just a ‘normal’ car, an eye-turner only because it looked really really cool.

But it’s not. Unreal.

It has given back to this young person their independence to go out to visit friends, go swimming, or horse-riding or whatever. Despite a spinal injury that confines them to a (also pretty snazzy) wheelchair. It has given this young person independence from their family, carers and helpers. It’s, of course, not just the robot that makes this car so different, it’s also the way it can be driven: with a second ring behind the steering wheel instead of the usual accelerator pedal and a stick beside the steering wheel instead of the pedal-operated brakes. And some other gadgets, I’m sure we didn’t see or paid attention to because we were in such awe!

This is all truly impressive stuff. Demonstrating that there are no limits to what can be done by clever engineers who understand their clients needs.

I came across this really incredible live version of Learning to Fly by Tom Petty (with Stevie Nicks as backing singer!!) and a fantastic interaction with the audience. While Tom Petty once explained that he got the idea to the song from listening to a pilot saying that flying was really not that difficult, but coming down was — in my mind, the song turned into something slightly more transcendental, for lack of a better word.

It’s, at least in my mind, about life and its limits and the determination not to let that interfere with our aspirations and dreams.

I am learning to fly. But I ain’t got wings.

How cool is that!

Take a walk on the wild side. Sure, why not?

This song is from 1972. Incredible 46 years old. And it sounds as fresh as ever. When it came out it was more than controversial. Except in Germany, Germans don’t listen to – and if they do, they mostly don’t understand – the lyrics. Just remember Zappa’s Harry Brown, number one in the German charts for months. Maybe that’s the reason why it’s easy to take that walk, on the wild side, in Germany?

Earlier in the week Pádraig took a walk, with a little help from his friends.

 

This is stuff he has done before here in Germany. (At a time when one of Ireland’s leading neuro physios wouldn’t even sit him up. When a private company distributing exercise equipment in Ireland was stopped by a physio and a physio manager selling that equipment to us. It would have been too dangerous for Pádraig, they told us.)

But he had never walked with such fluency, with so much ease, and with so little support.

Today, Pádraig did one better than earlier in the week (but today no-one took a video…). He did what he has been doing in the pool for some time now: he lifted up his legs and moved them forward himself. Slowly, a bit awkwardly, with interruptions, with me holding him and the therapist checking his feet and legs, and over just a short distance. But he did it.

I had to think about that “Walk on the wild side”. He was doing things nobody is supposed to do, according to the establishment. It was like shaving your legs, plucking your eyebrows and going: “Doo do doo, doo do doo, doo do doo”.

It’s such great fun and so enjoyable: doing your thing, because that’s what you want to do and that’s what you need to do, and you don’t really care about what you’re supposed to do doo do doo, doo do doc, doo do doo.

What a perfect day!

If you want muscles or nerves to react you have to stimulate them. If all is well that stimulation mostly originates in your brain, or is at least processed there. If all is not that well, then you can use ice sticks, right? Ice sticks. What else would you use?

This is what one of Pádraig’s SLT here asked. What else would you use? Is anyone stimulating those muscles in his face to get them back to work? The muscles you use to turn up your nose at something, the ones you use to smile, use to frown or to press your lips against each other. (You will notice that I pressed the wrong button when I tried to capture what she did today;)

The good thing about ice sticks is that you can prepare them yourself at almost no cost: just fill a syringe with water and put it into the freezer.

The treatment is called PNF or: Propriozeptive Neuromuskuläre Facilitation, and is explained (for those who speak German:) in: die Behandlung von Fazialisparesen: Stimulation der orofazialen Muskulatur durch PNF.

Here is what the therapist does, using stimuli in a specific order: (1) thee strokes using ice across the muscles; (2) “tapping” to dry the skin using gauze (or pulp cloth); (3) “stretch” the muscles; (4) pull/push muscles against resistance.

It’s that easy. And effective. I learned something new today (and will try to record it again tomorrow, hopefully pressing the correct button).

What would you prefer listening to when going for a walk: music or a podcast? — I’ll come back to that in a minute.

For the next three days, Pádraig and I will be on our own here in Pforzheim. It’ll be a lot of work and less time off for both of us, but it’s also an opportunity. Because of the intensity of the support Pádraig requires there are alway people around. There will, of course, still be the daily therapy and routine, but there will also be time for just sitting down and connect, I hope.

It’s our third week in Pforzheim and there are now less than two weeks to go. Next week, we’ll be thinking about packing our bags, planning the trip to the railway station and on to the airport. If all goes according to plan, the flight back home willl be Pádraig’s (and mine) first flight without Pat (and another helper instead).

When Pádraig is doing his daily hour in the Lokomat, I’m trying to make that hour a little less boring by playing something on the phone for him using his headphones. The biggest challenge for me, I had thought, was to find music he would like. To be fair, he has a very varied taste and is generous when listening to music, but I didn’t want to bombard him with stuff I thought would be nice to listen to while ‘walking’ for an hour. – That is until I saw, by accident, that spotify also offers podcasts that look really interesting. So I asked him. And guess what — for the past week Pádraig decided to listed to podcasts rather than music. Real ‘heavy’ stuff like new cultural developments, Brexit, gender issues, history. In my simple mind and, to be honest, not really thinking about it too much, I had assumed music would be the thing, because it’s relaxing, distracting, and, in most cases, just nice to listen to. But he prefers to keep his mind busy during that hour of his ‘walk’.

The president of the University of Limerick today circulated and email:

Dear Colleagues

I am delighted to announce that the winner of the 2018 Award for Excellence in Service to the Community is Reinhard Schäler.

Reinhard, a Lecturer in the CSIS Department, was nominated for his work with the Rosetta Foundation and An Saol.  Reinhard is founder and former CEO of the Rosetta Foundation, a charitable organisation whose mission is to relieve poverty and to develop healthcare and education through equal access to information and knowledge across the languages of the world. It helps not-for-profit organisations by connecting them with a worldwide network of volunteer translators.

Reinhard is also the CEO and co-founder of An Saol , an organisation which raises awareness of the challenges facing survivors and families of severe Acquired Brain Injury.  He is currently leading a pilot project to establish a day-care centre which will offer an intensive neurological rehabilitation programme to survivors.

I know that you will join me in congratulating Reinhard on this outstanding achievement which recognises the depth, breadth and impact of his work in our local and global communities.

Kind regards

Des

Not sure what to think or to say.