Food

I don’t know how many people I’ve asked whether there is a cook book for persons like Pádraig. They looked at me as if I was from Mars. Even the dieticians. Their answer was: just go into a supermarket and have look at the dairy section. All the soft stuff.

Nice one, but it ain’t as easy as this. There is stuff that ‘bonds’ badly with the chemistry inside a mouth that isn’t used to food anymore, an environment that produces phlegm, stuff that is difficult to swallow. Milk products are part of this range. On the other side, there is other stuff like ‘Apfelmus’ (stewed apple) or mashed carrots or broccoli that is easy to process and easy to eat. This stuff, in a way, by-passes the bad chemistry or, maybe, neutralises the phlegm (or mucus). – So, why isn’t there a guide, a cook book, pointing all of this out, telling those of us who need to know, what we should be cooking?

There is another issue I’ve been thinking about. Where there are limited resources, people tend to do whatever they can to get access to those resources. Once they’ve managed, they’re happy. Bu if they shared their knowledge and thus facilitated other people to get access to the same resources, they would even be happier.

The new, foldable Vojta-table

The new, foldable Vojta-table

Today, a new miracle arrived: a full-blown brand new Vojta-Table. A therapy table, so big, it just about fitted into Pádraig’s room, and only because we deduced that his wheelchair could be parked in the hallway.

Food, and food for thought.

Doblò

It depends.

Following the Charlie Hebdo killings in Paris, hundreds of thousands went onto the streets to protest, including many heads of state. They declared their solidarity with the victims.

In April, the New York Times reported that, so far in 2015, more than 1,500 people drowned in the Mediterranean trying to reach Europe. Heads of State of the European Union observed one minute silence.

It depends.

Not the exact model, but the type of car friends are giving to Pádraig.

Not the exact model, but the type of car friends are giving to Pádraig.

Last week, the mother of an old friend died. She owned a wheelchair enabled car, a Doblo. And guess what – well, I know you’ll never guess. The family decided that it would have been her wish for Pádraig to get her car. This coming week, if all goes according to plan, I’ll be driving the car to Hamburg.

Is this not absolutely and completely amazing? I cannot believe this incredible generosity. Just can’t.

Good

imagesPádraig had a good day today, I’d say. Easy going morning and a long walk along a stream in the afternoon,  a small meal and into bed for the night. That’s how it was.

My mind is full of pictures, memories, plans, expectations, hurt, all mixed up, disoriented, out of sync, a bad headache and turned stomach. That’s how it feels.

I had always thought that a life has a beginning and an end. I am beginning to think that what’s happening here is that there are several lives all in one lifetime. I know my life is not my life anymore. Pádraig’s life definitely is not his life anymore. Yet, the world seems to be the same, we’re here, in the same world where we left our previous lives.

Pero yo ya no soy yo,
ni mi casa es ya mi casa.

We got a few of phone calls today: one from the team leader of the Lourdes train checking out a few details for the trip in just over three weeks time. Another from an Irish person in Hamburg who’ll be visiting us tomorrow. And a third one from someone we got to know in a hospital who’ll visit Pádraig and us as well. Busy times.

Busy times and a good day. In a different life.

Beo@3

Mayday. May Day. Workers are on strike. What an inconvenience. Anyway.

Two dreams.

One. I had. So had his carer. Pádraig talking. We both heard his voice in our dreams.

Two. The scene is our home in Dublin. Our apartment in Hamburg. Both with mountains of stuff. Useless stuff. Use less stuff. Stuff that reaches up to my throat like a rising tide. Things I don’t use and less need. The need to strip everything down to the core. To what counts. The essential. Not the noise, the fog, the stuff that covers up and distracts the heart.

Getting back to Pádraig today was good, right.

Only today did I get a chance to listen to the great programme Rónán Beo@3 on RTÉ Raidió na Gaeltachta of last Wednesday, 29 April 2015, when Rónán played a new song by Marcus Mac Conghail, a new song for Pádraig. – Even if you don’t have Irish, listen out for the ‘marathon line’

Ritheadh gach céim den mharatón
and every step was a step that was bringing you closer to home.

The song starts at around 2″20′ if you want to skip the introductions…

Screen Shot 2015-05-01 at 21.46.33And every step is a step that is bringing you closer to home. Pádraig. Dreamboater.

Sisters

It’s too late again to be writing. At least anything that would make sense. Work meetings most of the day, a long drive to Limerick and back, planning for the coming months. Or is it: for the months to come…

I’ll be getting a lift to the airport (busses will be on strike tomorrow) very early and be back in Hamburg for a second breakfast. It’ll be a bank holiday tomorrow in Germany. 1st of May is a day for demonstrations and speeches by workers’ union leaders.

It was really good to spend time with Pádraig’s sisters. We see each other far to little. All that will change later in the year.

Pádraig had a good an active day today, I heard. MOTOMed, Stehbett, physio- and stehbett. Tomorrow will be very quiet again with just one of the carers coming in the morning.

i’ll better go. It’ll be a short night.

Lifting

You can lift a weight. Something can be up-lifting.

Today, Pádraig decided to do a bit of lifting himself: he first lifted one arm, then the other. He’s getting really good at it.

And in a strange way, I believe the ‘lifting’ has got to do with the ‘standing’. Standing up in his magic bed brings back sensations he probably had almost forgotten about. Sensations that lead to movements. To alertness.

After many months, tonight I’m back in Dublin, having travelled half a day, having been at half a dozen of meetings, getting up tomorrow morning before the crack of yawn, traveling to the west. Days are always flying here. And on the next day it’ll be back on the red eye to Hamburg.

Whatever it is, this here is home. And it’s lifting me. Up.

Borsigplatz

UnknownThe plan today of calling it early is not working out. Borussia are still playing. Never would I have been able to imagine to sit on top of a house in Hamburg, Pádraig sleeping next door, Borussia Dortmund struggling to beat Bayern München to get into the German Cup Final.

Not sure what is more surprising: München not having beaten Dortmund (yet)? Me sitting in an apartment in Hamburg? Pádraig being asleep in the next room?

Just got an email to say that the incredible Marcus Mac Conghail will be on Rónán@3 on RTÉ Raidió na Gaeltachta national radio with a new song for Pádraig.

Pádraig is back eating much better, almost as good as before the operation. He is ‘standing’ in his standing bed every day. I transfer him, with his help (and another helper), between bed and wheelchair. His helper today said: “He really is a fighter!” – Tell us about it, I thought!

Screen Shot 2014-11-05 at 00.30.27By the time I finished writing tonight, Borussia Dortmund did the nearly impossible and beat Bayern Munich at home not in full time, not in extra time, but in a penalty shoot out! One more match and they’ll be celebrating on Dortmund’s Borsigplatz, painting the town black and yellow.

Nothing is impossible. When you are a fighter. And a Dreamboater.

=> Don’t forget to tune into Rónán tomorrow at 3 o’clock. <=

Nothing

imagesOh, don’t mention it. That’s nothing!

I’ve run out of more steps to germanise yourself – or, rather, the site I’d copied the nice pictures from just couldn’t come up with more.

So, above is the first step to become a true Irish person: never, NEVER, accept praise. You might just have liberated your country, awarded the Nobel Prize, or saved a the rain forest – whatever happens, whatever praise you might get, ALWAYS say something like: “Oh, that was nothing! Really, anybody would have done the same.”

Those of you who did follow the ten steps to become German would never react in the same way. Instead, you would have said something like: “Thank you! Since I was a little kid, I’ve always loved he environment (step 2)! That’s why I became as bio-biologist (step 3). That’s why I think you’re right: My contribution really did change the world (step 9)!

What Andrew and Cian did yesterday was absolutely humongous. But they would never admit it. They are like dozens of people, some are family, some are old friends, some I barely know and never met, who have  made such a difference to Pádraig’s and to our life. And I doubt they have realised this.

One of those friends is recording a new song soon to be released, hopefully, into which he added:

Ritheadh gach céim den mharatón
and every step was a step that was bringing you closer to home

Had I to explain to someone why I am doing what no-one in their right mind should be doing (no-one of my physical condition that is), I could not have said it better.

Today, Pádraig was standing in his ‘standing bed’. When I asked him to lift his arms, he did. When I asked him to lower his arms, he did that too. There is another first for you. Both arms. Up. And Down. Standing up does make a difference. Passing through different stages does too. Keep going is the key. Being a Dreamboater is the secret.

We are Dreamboaters.

But it’s nothing, really. We just keep going, there’s nothing to it.

Marathon

No – not the London marathon but the Hamburg Haspa Marathon.

The Hamburg Marathon is called Haspa because it’s sponsored by the Hamburger Sparkasse, the local savings bank. This year, it was its 30th anniversary.

Two friends of Pádraig had come over to join me attempting a few record-breaking times. Cian had been here last year and had run so fast through the whole of Hamburg and its outskirts that I am sure he missed half of it. I ask you: how can you enjoy the sites of a city as beautiful as Hamburg if you just rush through it like a mad man? You’ll remember that I took an extra hour, just because I enjoyed it so much. Andrew had not been here last year, but had been training at home in Ireland for the big day.

Well this year, Cian ran just over an hour and a half faster than I did – both because he just could not hold back and I had decided I would not allow myself to get rushed. Andrew ran his very first marathon and did really well. It’s amazing what you can do when you are in your twenties!

Anyway, I was really happy to have made it, and that Pádraig’s two friends had come over for it! (Andrew’s fundraising page is still up.) And yes, Andrew, you did run a marathon! Absolutely brilliant!

Tonight, we are so tired, but so proud that the “good” Troika made it to the finishing line. At the starting line, way behind Cian and Andrew, this morning, I was not so sure that we all would. But it turned out that the weakest link today ran his most enjoyable marathon, not exactly fast but very steady. Maybe that is the secret.

It was sad to see Pádraig’s friend leaving tonight. But I’m sure that they will be back!

Fiction

Ireland, in a way, is anarchic. Would you agree?

There are no ‘real’ rules, bureaucracy doesn’t work because nobody cooperates, everything you do is as if you were doing it for the first time. If you want to get something done you need to know the right people. If you want a passport or a pension, your local T.D. (or member of parliament) will fix that for you, not the relevant office in the correct Department – I know these are clichés and they don’t always work, but they do kinda.

I had to think of that today, because Pádraig’s friends who will be running the marathon with me tomorrow (well, they will be ‘running’) went out last night in the “Sternschanze” which is where the cool people hang out. They came about a party and alternative film event organised by what they felt were anarchists – with a difference: the German anarchists were actually very organised and had managed to put together quite an impressive event… it sounded so funny. Even the anarchists are organised in Germany. Just think about it…

Pádraig is now getting in and out of bed without the lifter. With the help of another person, I am now managing to get him out of bed and into his wheelchair and back into bed. There is still a bit of tension and at times it feels a bit too close to panic, but we are clearly doing a better job every day, learning to do it slowly and securely. In the process, Pádraig has learned how to put his arms around my shoulders (with a lot of help), feel his weight on his feet while I am standing him up, and, best of all, can avoid being transferred in the lifter which works fine but must feel a bit strange.

Today, I got a phone call from a very old friend with whom I had not been in touch with for, I’d say, thirty odd years. He was in Dublin and had decided to look me up in the telephone directory. The Telephone Directory! He then tried the web and found my letter to the Taoiseach, with my telephone number and address. If you had told someone that this was the way to find an old friend 10-15 years ago, they would have told you that you were reading too much science fiction. It was great to hear his voice, his news, to know, that after all these years, we were still in each other’s mind, and hear our promise to arrange to meet some time soon.

My legs and my back already feel very tired. Time to give them a rest for the big day tomorrow.

Before I go: here is the 10th and last step to germanise yourself.

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