SenseLess

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.

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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.

OnTheRoad

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.

imagesThe 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…

Kultur

Saturdays in Pforzheim.

It’s 32 degrees outside and, for a change, we are happy to have a north-facing apartment

Germany never seizes to amaze me. Actually, maybe it’s because there is not one Germany but so many different once. It sounds obvious but: Pforzheim is not Hamburg.

We went for a walk with Pádraig today. Down to Pforzheim. Literally.

FullSizeRenderIf you know Pforzheim you’ll know that this is easier said then done. Last weekend, Pat, Pádraig’s visitors, and Pádraig went for a walk and met a wheelchair bound lady from the rehab centre here whose wheelchair batteries had run out of juice because of the endless uphill battles they had fought to get her back up from town into the rehab centre…

Today, it was my turn of running out ‘batteries’ when we returned from our visit in town.

But the visit was worthwhile.

Town was full of people dressed in ‘Dirndl’ and ‘Lederhosen’ to have fun in the “Oechsle”, a kind of fair with bavarian music, lots of beer, and even more stuff to eat. All part of German “Kultur”.

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IMG_1924We had an ice-cream in an Italian ice-cream parlour that this year celebrates its 80th anniversary. Imagine, they opened in 1935. Imagine what Germany, even Pforzheim was like then. Germany was getting ready for war. The nazis were in power and, in effect, extinguished culture, imposing a regimen of barbarity for which it is difficult to find a match in history. And this in the country of Goethe, Schiller, Beethoven, Schubert, Heine, Brecht…

IMG_1927Town was full of curious stuff. For example: Have you ever heard of Ear Candles (“Ohrenkerzen”)? Apparently, when you stick them into your ears and light them, they act like little chimneys which suck out liquid and ‘Ohrenschmalz’.

Isn’t that amazing? They say that these candles work so well that they have helped countless people to avoid expensive and at times dangerous surgery.

Because it was so hot today, we decided to check out the shower for Pádraig. We brought him into the shower, switched over from wheelchair to shower chair and gave him his first real shower in ages. He had one during his 14 months in the Schön-Klinik, and I think one in Beaumont Hospital. We will need to practice a bit to get the details right,

MidnightTrain

This morning, we got new ramps delivered to cover the big step from the living room up to the terrace door and from there the small step down to the terrace. At the same time, the nice gentleman from the Wohnungsbaugenossenschaft – years ago he would have been called a ‘Genosse’ – who had handed over the keys of the apartment to me in January was there again doing a preliminary check on the apartment, a Vorabnahme, because we had given notice to leave.

It was a bit of a strange situation, the two of them trying hard to ignore the presence of the other, and me dealing with each of them as if the other were not present.

The whole day was strange being in this apartment on my own, the apartment where Pádraig spent his first months out of hospital with us, where we celebrated Patrick’s Day in March and his birthday in May, where we got used to carers and therapists coming to our place, where we spent some, thankfully few, days worrying so much about whether all of this would work out well, whether we had made the right decisions.

I had until 4pm to do what I had to do and thought I had plenty of time.

I didn’t.

A full moon rising tonight in central Germany.

A full moon rising tonight in central Germany.

10 minutes before I had to leave I was running up and down the stairs trying to sort stuff out, routing through shelfs and folders trying to get papers together.

When I saw the bus coming out of Wilsonstraße, I ran as fast as I could (you know I’m more of a long-distance man than a sprinter) and just about made it – only to discover it was the bus to Farmsen rather than the one to Wandsbek, the one I should have got on to. So I got off again and waited another five minutes for the right bus. – Those in the know will wonder why I did not get the train to Hauptbahnhof in the first place. As luck has it, they were all cancelled today because of work being carried out in the Hauptbahnhof.

Pádraig finished the second of six weeks today in Pforzheim. It’s no surprise that five hours of training a day do make a difference, as anyone who ever did train intensively knows. Pádraig is much fitter, more alert, and able to maintain his body better, eat better and more, and get his digestive system over more than two years of tube feed, Sondenkost.

I am sitting on an ICE high-speed train that is already running 15 low-speed minutes late which means that I might miss the last connection from Karlsruhe to Pforzheim which would get me home by midnight…

Guess what: the train waited! About to walk to the apartment:)

Belonging

imagesIt’s an upside down kind of day today. For almost two years I’ve been travelling from Hamburg back home. Today, I’m going up to Hamburg from Pforzheim just for a day to sort out a few things. But really, it’s just another of these days where everything seems to move, seems to be on the move, constantly, without rest. It takes a few minutes in the morning for me to know where I am. Even during the night. Do I need to wake up to turn Pádraig? Or am I sleeping on my own in an otherwise empty bedroom? Do I need to listen out for sounds of discomfort? Do we need to get up early to get everything done in time for therapies? What language are people speaking? And it’s not just as easy as German and English; it’s Polish, Russian, Croatian and who knows what else. When I go out for a run, will it be on the hills (mountains, really) of Pforzheim or along the Wandse in Hamburg or towards Clontarf along Dublin’s seafront? Who will I be meeting today? Therapists, for sure. Doctors, not anymore. Which bed will I be waking up in? I rarely remember the bed I fell asleep in because you don’t remember anything when you collapse into a bed and pull the blanket on top of you to find some hours of rest. Will people be coming to meet me? Will I go to meet them? Will I have to travel or stay? Will we need to go somewhere with Pádraig or will they be coming to see him? Pádraig is eating lasagne, potato dumplings, chicken, turkey, vegetables, all of course almost mashed with a fork, but so what? He is drinking water, juice, beer and fizzy drinks. He is trying so so so so hard you wouldn’t believe it. I am absolutely shattered in the afternoon. How does he manage? We get up at 6:30 am to be ready for the first therapy session at 8 am that lasts for an hour. Break to have something to eat for breakfast. Another three hours of stretches, pull ups, and standing for a full hour, until 1 pm. Another hour of this robotic Lokomat walking machine. Before finally having something to eat in an empty cafeteria because everybody else is long gone for a siesta, some rest after a long and challenging morning. How Pádraig is doing this, keeping at it, telling his therapists to continue, with his tongue to the right, meaning “yes, go on, do what you can, make an effort, I’m trying like hell myself!” It’s Karlsruhe, Frankfurt, Kassel, Göttingen, Hannover, Hamburg. A journey from the hot south to the rainy, cold north of Germany. One big country. Much bigger than I did remember. Hours on motorways when we went there. Now, it’s hours on a high speed train that could go from Dublin to Limerick in an hour. It won’t happen because there’s always Limerick junction in the winter when the points freeze and can’t be moved and in the summer when there’s horse racing. When I grew up, the street and the neighbourhood we lived in were my home, the city, maybe, but the rest? Now, I am driving, getting onto planes, trains, buses, missing connections, trying to make up for lost time, travelling with people on the phone converting wherever they are into their office, people with perfumes I cannot stand, nobody talking, except to a wire hanging between their teeth out of their mouth, connected to what was once a phone, couples trying to hide away their fights, avoid looking at your fellow traveler, and if you do make sure not to be caught.

This world is too big for me.

Maybe I’m too small for the world.

I want to remember where I went to bed last night when I wake up in the morning.

I want to know that I am, we are. Where we belong.

Having made new memories over the past 2 years and 2 months.

WalkIn

Everybody should have one.

So far, we never did.

I know, under the circumstances, this is not a big deal, you might say. But it meant, we could never shower Pádraig. It means that Pádraig had less than a handful of showers since his accident.

Imagine.

I have no idea why people still install those basins surrounding a tiny shower area when they could have a walk-in shower.

Not the walk-in shower but a view of the two rooms we've got here.

Not the walk-in shower but a view of the two rooms we’ve got here.

Now we’ve got one in our apartment in Pforzheim and today I made the first move to use it for Pádraig. We’ve been here more than a week by now so you can see, I’m not really a fast mover. I tried a hair wash using the shower and it worked brilliantly. Pádraig’s head control is so much better now. It’s amazing. It won’t be long now until we use the shower chair.

Not too long ago, I bought an album I had bought for the first time when I was 17. It’s by a group from Dortmund called Manderley. For a while they were one of the best German folk groups. They were singing in German, mostly their own compositions, but not exclusively. They had a German version of Dylan’s All Along the Watchtower, the song that almost got me divorced on my wedding day when I went off with Klaus for half an hour or so to practice for my performance…

Anyhow, I wanted to share this music with you. It’s not really for old, reasonable, you-have-to-consider-both-sides kind of people. They took sides and their lyrics were a quite revolutionary – always to wonderfully arranged voices and music. Listening to this music made me realise the compromises I made while getting older. All of a sudden this outrage in the face of injustice you often feel when you are young

Here is the first song from their album Fliegt Gedanken Fliegt. It’s called: Sag mir, were sie sind (Tell me who they are)

Sagt mir wer sie sind
Die Mächtigen in unserm Land
Zeigt mir die Gesichter
Ruft die Namen laut hinaus
Wir wollen Euch nicht
Und wir haben Euch nie gewollt
Ihr Geld- und Gottesanbeter
Wir brauchen Frieden für uns
Und für die ganze Welt
Und wollt Ihr nicht
So passt gut auf Euch auf

Tell me who they are
Those in power in our country
Show me their faces
Shout the names out loud
We do not want you now
And we never wanted you before
Your money and Mantises
We need peace for us
And for the whole wide world
And if you don’t want
Then take good care of yourselves

Schicksalsjahre

I just did what you shouldn’t do.

I watched TV when I should have gone to bed early to be ready for another demanding day tomorrow morning.

A two part series on the second world war. In one go.

There were two sentences that stuck in my head. They were repeated again and again. One was that ‘dying would have been easy’ and the other was ‘the war destroyed everything, make sure that this never happens again.’

The film was part of a 3SAT week of Stories from the War (Kriegsgeschichten), and it was called Fateful Years (Schicksalsjahre) based on a true story and a book by Uwe-Karsten Heye called Of Happiness, only a Shadow (Vom Glück nur ein Schatten).

I watched it with Pádraig and I am sure he followed it.

Basil Fawlty taught the world that you should not mention the war to the Germans. But I think the memory of the war has never been as present as it is these days.

Germany expects 800,000 refugees this year. Most of them coming from countries that have been torn apart by wars. Families that were split up. Families who lost their fathers or mothers, their brothers or sisters, their children.

IMG_1890What’s the news from Pforzheim? – Pádraig is really becoming noticeably more alert and awake here. Though when going through this bootcamp what choice have you got?

There was a bit of an un-inspiring lunch today with loads of pretty dry noodles (which we skipped) but really nice breaded turkey breast which Pádraig almost finished – I don’t think that he had managed to eat meat like this before. We even had time to enjoy some of the sunny weather here on the famous balcony overlooking the Black Forest.

I learned that you can actually mince a bread roll with butter, cheese and pate, put it in the fridge, and then get it out for lunch. Pádraig finished that with gusto for his dinner or, literally, “Abendbrot”.

IMG_1892There was a meeting with people involved in building the extension today, the first I didn’t attend – but it seems, they managed perfectly without me. Pat started again to go back on a weekly basis while I will stay here most of the time.

It sounds corny but this film really had an impact on me. There is always the question what we as relatively insignificant individuals can do to avoid suffering by our fellow human beings. We cannot bring ‘world peace’.

But we can make sure that we show respect, treat with dignity and offer help to those who really need it; that we insist in justice and basic fundamental rights for our fellow humans. The sick. The helpless. The desperate.

Claddagh

I know, I know. It’s jumping the gun a tiny little bit.

While Pádraig is doing fine: today he surprise his speech therapist who had brought a ‘face former’ with how well he could close his mouth and keep this gadget in position; he had close to three hours of OT/physio, standing up one of these hours against a frame; he then ‘walked’ in the Lokomat for 45 minutes – his personal best: and then finished up a full plate of Lasagne – well almost: I helped him with the crispy cheese bits, the part he used to like most…

And I recognise that we have to deal with a few small details first: like surviving this ‘bootcamp’ for another four weeks and a bit; finishing up the building work at home; emptying the apartment in Hamburg; dealing with a myriad of German offices; and, last but not least, getting the NRH and the HSE Primary Care Unit to commit…

FullSizeRenderBut there was a note that came with the beautiful Claddagh ring his friends gave to him over the weekend that explained the meaning of this ancient symbol of “love, loyalty, and friendship“. And then there was a card they had written to him with one of the lines saying: “Dublin misses you!

Which all made me think of his journey back home to Ireland.

It’ll have to be a boat, doesn’t it?

The Dreamboat!


 

Ibi scilicet uidi in uisu noctis uirum uenientem quasi de Hiberionecuinomen Uictoricuscum epistolis innumerabilibuset dedit mihi unamex his et legi principium epistolae continentem ‘Uox Hiberionacum’, etcum recitabam principium epistolae putabam ipso momento audireuocem ipsorumqui erant iuxta siluam Uocluti quae est prope mareoccidentaleet sic exclamauerunt quasi ex uno ore: ‘Rogamus tesanctepuerut uenias et adhuc ambulas inter nos ” – I know this is completely over the top, to connect St Patrick’s confessio with all this, but what I would not give if he was to “walk again among us”.

Caring

imagesIt’s 7am on a Sunday morning and sure, what better place to be than on an Aer Lingus flight back to Düsseldorf. It’s like stepping back in time, in comparison to the sparse, tightly-spaced, uncomfortable (often-but-not-today-cheaper) Ryanair planes with tapes instead of people talking to you – except when they want to push their latest bargains or drinks onto you .

A good friend picked me up at 5:30am – sure, what else would he have done that hour of the day on a Sunday. He said he would go for an early morning run anyways. And sure, he brought the best, freshly-homemade bread in Dublin with him to remind us exiles of home.

quoteOur two daughters wanted me to wake them up and to say good-bye to them before I left. In their half-sleep, they reminded me to check that I had tickets and passport before I left.

So, what’s so strange about all this? Why am I mentioning it? – Think about it for a moment. There is so much more going on here than what meets the eye.

All these were everyday situations. Normal. But as is the case with so many everyday situations, we are missing stuff because we are moving too fast.

Everybody was there this morning because they cared. In an everyday ordinary unspectacular way. Caring.

People caring make our world human.

It’s 23:00 now in Germany. I arrived ok earlier, spent some time with Pádraig and with Pat. She’ll be going tomorrow morning really early, to make the same journey I made toady, just into the other direction. I know all this has to be done, but it is so so tiring.

HomeRun

Pádraig had a good Saturday with his two friends over from Dublin. It was the first day without this intensive exercise programme for him. Time to recover from what must have been an absolutely exhausting week for him.

I went for the 10 mile race in the Phoenix Park this morning, my first in the race series. The next will be the half marathon, and then the Dublin marathon.

With a bit of luck, there won’t be any need to travel to get here for that.

With a bit of luck, we’ll all be back together, at home.

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