It’s a complete myth that Germans drink nothing else but beer. Though they do drink a lot, much more than the Irish according to a website I found. Per capita, only the Czechs drink more beer in Europe than the Germans (107 litres) whereas the Irish are far down the list with just 779 litres, beaten even by Finland.
Yet – when you come to Germany, don’t drink beer. Become a real German and drink a Schorle. Apfelsaftschorle, to be precise. There’s nothing like it. And your German friends will look at you full of admiration, asking “do you have this in Ireland, too?” More on Schorle later…
Today there was another “First” day.
Remember, we wanted to get rid of the tubes stuck into Pádraig. The first he managed to get rid of was the tracheostomy in January. Today, following last week’s operation and a few x-rays, they blocked his catheter and told us that if he continues the way he is that we should remove the catheter altogether within a few days.
Look at this picture.
If you ever saw the side of Pádraig’s bed before, there were always tube hanging around. Tonight, it’s clear.
Although they said this a few times before, I believe that we’ll be heading back to the apartment tomorrow, after two and a half weeks. The longest I’ve ever stayed in hospital in my life. It’ll be great!
So, here is a piece with everything you ever wanted to know about Schorle and step six to germanise yourself!
There was a bit of action today here in the room. Some brave nurse had decided that Pádraig was going to sit in their special chair: like a wheel chair with less cushioning. So, with the help of a couple of nurses and a scared physio, I lifted Pádraig up, turned him around and sat him down into the chair. And after two hours, I did the same in reverse. You wouldn’t believe how proud I am to have been able to do this. OK, it was not a really wheelchair but it worked, meaning that we could manage, if needs be, without a lifter.
Preparations for the trial in Boston are continuing. I really cannot believe that Pat and I will be flying together to Boston in just a few days’ time. To hear all the details again. How will we get through this. – But, there’ll be another trip in May!
Today I heard that we’re going to get some help from the Maltese Order to get Pádraig (and ourselves) to Diepholz, the most northern parting point of the special 24-hour train to Lourdes in May. It’s close to two hours’ drive from Hamburg towards the south and a fully-ledged ambulance would have been prohibitively expensive. Can’t wait for it.
Tomorrow is discharge day, if all the tests in the morning work out well. Again, fingers crossed. We’ll have to get outahere!
Today’s German Music Tip Eric Burdon and Udo Lindenberg, Verdammpt, wir müssen raus aus dem Dreck. Probably the worst quality video on youtube, but still a great performance by two great auld rockers. The quality of this version is slightly better and older: about 35 years! (Watch out for Eric’s head band! – Who needs Woodstock if you can just watch one of Udo’s concerts?) What’s hot Moving, Sitting, without lifter
What’s cold Trials
The German word/phrase/verse of the day Für’n Appel unnen Ei
We’re hanging in there, but at least I am beginning to get the hospital syndrome. You notice it when you are going out for a few minutes to a shop and the only thing you want to do is get back into the room. There is also a constant tiredness, paired with a lack of self-determination – which does not have any resemblance with life outside.
Since we have lowered the anti-seizure medication to be stopped in another couple of days, and with some time having passed since the operation, Pádraig is getting more alert again. He started to eat again and to move, at least a little bit. It really beats back home the message that we will have to try very hard to get him back into every-day “training” as soon as possible.
His scars have been healing very well and any bruising that was there is disappearing. Every operation is scary but this one, and I almost forgot this, this one was an operation we decided to go for to allow him to get rid of tube number 2. Tube number 3 will be the PEG, and if he gets back to the level of eating and drinking that he was at before the operation, that won’t take too long.
There’ll be loads of stuff happening this week and with every day that passes, it becomes more likely that the insurance company of the driver who hit Pádraig will insist that the case goes to trial, meaning that Pat and I will get off to Boston once again.
Today, a really brave nurse helped Pat and myself to first sit Pádraig up on the side of the bed, and then stand him up. At the end, it wasn’t clear who was more exhausted, Pádraig or us. But – isn’t it great that we can start doing this with him? Yes, it is “spannend”, but it must also be terribly exciting for Pádraig to be able to “stand” on his own feet again – all be it with three people helping him up!
“I am alive, I can think, and no one has the right to deny me these two realities.” (J.-D. Bauby)
Happy Easter.
This morning, I woke up to a bright, wonderful day. The sky is blue, the air is crisp and clear, and somewhere a bit further away, there are birds singing, greeting the day.
The nurses had decided that I should sleep and that they would turn Pádraig at the usual times, at around midnight and again 4am. It was very kind of them and it felt good to be able to stay in bed when they came in. When I got up once they had left (just in case:) I noticed this smell of smoke in the room and thought, well, maybe it’s just in my imagination. When I asked them at 4am, when they came back in, they said “Osterfeuer” , Easter bonfires. Half asleep I thought “as long as those fires are outside all will be ok”.
This morning, I finished what the Financial Times called “One of the greatest books of the century”, The Diving-Bell and the Butterfly. I was “written” by Jean-Dominique Bauby, editor of Elle magazine, who in 1995 had a stroke and woke up with a locked-in syndrome: he could hear, see and understand everything that was going on around him, but not communicate – except with the blink of one of his eyes: one blink for ‘yes’, two blinks for ‘no’. He wrote the book in Room 119 of the Naval Hospital, Berck-sur-Mer, convalescent home for the disabled, next to the beach.
Jean-Jacques Beineix made a film about Bauby and showed how he used his left eye to go through what he called the “hit parade of letters”, with the most used letters coming first, selecting them one by one: E S A R I N T U L. The director, Julian Schnabel, won the prize for Best Director at the Cannes Film Festival in 2007 for the film.
Bauby also established, in 1996, a year before his death, the Association for Locked-in Syndrome (ALIS): to collect all the present information about the syndrome, to allow sufferers to communicate better with one another, to create means of breaking the solitude and isolation, an to make them true citizens of the 21st century.’
Since last night, Pádraig is on a half-dose of the anti-seizure medication and much more awake. We’ll go on with this until Wednesday, when the antibiotic will be stopped too. He’ll have an x-ray in the morning and ready to go home in the afternoon, hopefully. – We have been here far too long. But I am sure that, in the end, it will be worth it!
Today was the day of the 30km run before the marathon. I managed to finish, just about… Tired and ready to go to sleep.
They do the rounds here just after seven. So getting up time is early, at around 6h30. Not on weekends. We expected to leave today, some time today. By now I know you won’t be surprised that we did not. We got an extension until Wednesday, when they will be able to check whether everything has healed, is fixed and working.
Staying in this room is really strange. After a while, you begin to detach from the life “out there”. Your rhythm is that of the round, the cleaning lady, breakfast, lunch, Kaffeetrinken, and Abendbrot (literally). In between there is washing, exercise, nurses, doctors, medication, therapists. More than enough to keep you busy, to feel tired, to wonder whether there really is another world out there. And then send us home (hammy…).
Just to make sure there still is, I went out for half an hour and had a look around a supermarket here on the UKE grounds. I walked around a bit dizzy and dazed: what was all this stuff for? Why would anyone buy any of this?
Back on the ward, it’s almost like home: nice, helpful people. All one would need is here. And, schwuppdiwupp, you realise how quickly one can get institutionalised, no longer able to function in a world where you have to take your own decisions, where you don’t get your day organised by someone else. A world full of supermarkets,
Patrick is clearly recovering from the operation. They decided that a drainage that had been implanted could be taken out. The wound looks clean and it’ll be a matter of days when the clips holding it together can be taken out. He is getting a different antibiotic now and we have decided first to reduce and then stop the anti-seizure medication. Today, for the first time since the operation, he was back eating, back lifting his left arm by himself when he was doing the exercises with me.
We were commenting that tomorrow is the day we’d have reached our destination on the camino. We’d go back to Madrid, have a fantastic dinner with a bottle of wine, and get ready to leave for Dublin. – To be honest, this looking-back stuff makes me so sad, I wonder whether it’s a good idea to do it at all. Remember what are, in our memory, the good times.
Because: these are hard times, very hard and testing, but these are also good times. In June of 2013, I could not have imagined Pádraig being responsive, being able to swallow, eat a little, breathe without a tracheostomy, squeeze my hand, and indicate yes and no with his tongue to (simple) questions. He is with us and that is the greatest gift.
Once you manage the following 5th step, it’ll be all downhill towards the ten steps to germanise yourself…
There was one item in the supermarket today I almost bought: it was the latest edition of the German magazine “Titanic”, not quire as radical as Charlie Hebdo, but similar to the Irish “Phoenix” or the US “Onion”. On its title page, Titanic has a cartoon with Angela Merkel saying “Mishap during Remembrance Service: Merkel unveils statue of Hitler too early.”
Inside the magazine, there is a picture of her and Mr Putin where he asks Chancellor Merkel: “Did you ever kill anyone?” and she answers: “There is no opposition in Germany.”
It’s all very close to the bone, but I like the kind of humour…
Tomorrow, we’ll all wake up to a day of hope, the day that death was beaten by one of us.
Over many years, I had one of the longest commutes one could have in Ireland. I had taken on a job on the other side of the country, in Limerick. It took me a few years to figure out how to do this: both, the station in Dublin and the station in Limerick were not in walking distance. So I had two bicycles: one in Dublin and one in Cork. It was about 20 minutes cycle under normal conditions on either side of the train ride. At the end of each day, I would have cycled a total of 20km and traveled 400km on the train.
I remember one Easter week cycling back home in Dublin in the dark, against the wind, and through pouring rain (just an ordinary day). I was almost home when the song “Oh Haupt voll Blut und Wunden” for some reason came up on my iPod. It was when I realised that life is like the Passion. That it was full of suffering and required huge efforts to see it through. That there are people along the way helping you up when you fall, washing away the tears, easing the pain. What surprised me most was that it was more a liberating thought than a depressing one, as i would have expected.
The UKE has a quiet room, a bit like a chapel, without it being declared a chapel. (If this sounds a bit “German”, it is.) Today, and with the day that’s in it, there was a book and on its open page was a short poem called Golgatha. It said:
Wann
wenn nicht
um die neunte Stunde
als er schrie
sind wir ihm
wie aus dem Gesicht geschnitten.
When
if not in the ninth hour
when he shouted
are we
like his spitting image.
For the past few years, this Easter Week, we took to the famous “camino” in Spain. We walked the one coming up from the South. Each year we walked it for a few days. In 2013, we made it up to Astoria, where the Ruta de la Plata coming up from the South meets the French route, coming from the East. This week, we would have walk passed the wonderful Puebla de Sanabria, en route towards Santiago. We would have stopped in some small village to see the “pasos”, Spain’s famous Easter Week processions.
For the past almost two years, this Easter Week, we did not go anywhere. This year, we spent it together in this room that represents our world.
Oh Haupt voll Blut und Wunden ist based on an old 13th century poem in Latin on the Passion of Christ. The music to this poem was written bei Bach in the 18th century and is part of the St Matthew Passion.
O Head full of blood and wounds,
full of pain and full of derision,
O Head, in mockery bound
with a crown of thorns,
O Head,once beautifully adorned
with the most honour and adornment,
but now most dishonoured:
let me greet you!
You noble countenance,
before which once shrinks and cowers
the great might of the world,
how you are spat upon!
How you are turned pallid!
Who has treated those eyes
to which no light is comparable
so shamefully?
I’ll get over this. There will be another day. Easter is near. And with it hope. Tonight, I have a heavy heart.
Maundy Thursday, apparently, is what the Germans call “Gründonnerstag” – not sure what either “Maundy” or “Grün” means in the context of this very special day. – They were saying on the news that Pope Benedict washed the feet of some prisoners tonight. Today, it’s about being, or at least trying to be, humble and decent, even, or especially, when you are the leader of a pretty large organisation like the catholic church.
This morning, Pat sent a request to a great programme on the Irish National Radio Station RTÉ Raidió na Gaeltachta she, Pádraig and I were listening to in Pádraig’s room in the UKE Hospital here in Hamburg. The programme is by Sinéad Ni Uallacháin and is called Sinéad ar Maidin, Sinéad in the Morning.
Within a few minutes, Sinéad had picked up that message in which Pat had asked her to play Mexico by Mundi (the Irish version). Instead of just playing the song, and as it turned out that she knew what had happened to Pádraig, she said they were all thinking of him and wishing him the very best. She said that, unfortunately, she did not have Amhrán na Phádraig, the album Pádraig’s friends had recorded for him with her, but that she was going to bring it in next week and play a song from that album on air. For me tonight, it was a reason to watch the video to the first song on that album, Dreamboat, again – the song written by Maitiú Ó Casaide and recorded in the summer of 2014 for Pádraig by around 40 of his friends over several days in a number of Dublin-based recording studios.
By the time Mundi started to sing Mexico (“Meicsiceo“) on Sinéad’s programme, both Pat and I were in tears. When we brought Pádraig across the big water to swim at the University of Kentucky’s First Division, the whole family flew over to New York (cheapest destination) and drove a long drive to bluegrass country, to Lexington, KY. Pádraig, being Pádraig, came well prepared: he had decided to play his music during this trip and that was that. There was just no way to stop his enthusiasm for the music he had brought along. While I was driving the car down south, the music drove me bananas. A couple of days later, when we finally arrived in Kentucky, I knew that song (and a few others) by heart – with Pádraig’s voice, in my head and in my memory, shouting out the chorus, with the happiest face on earth, full of excitement and a cannot-wait-for-what-is-going-to-happen-next expression from one ear to the other.
Abair liom, ‘beidh saol níos fearr ann’, ‘s an ghrian ‘ thógfaidh ár ngrá slán, Cibé fad gur tú mo leanán. Is cuma liom, Is cuma liomsa.
… I had no idea what all that meant. A couple of years later he made his dream come true and went to Mexico.
I am crying when I sing the chorus in my head, when I hear him singing as loud as he could, at the top of his voice, full of excitement, in my mind: Beidh saol níos fearr ann.
Not in my wildest dreams would we have thought, than and ever, that one day we would listen to this together again. In Hamburg. In Germany. In a room we’d share on a hospital ward.
Pádraig is still very weak and sleepy from the operation and the medication doctors have given him (we’ll stop that once we get home). Otherwise, he seems to be fine. Thank you to all who thought of him, send their good wishes, and kept him in their prayers. We all hope that he will get to a point where he can safely return to the apartment, which will, most likely, be on Saturday – he’ll be home for Easter.
Today, a nurse told a great story from her visit to Ireland.
She and a friend were traveling through Ireland ‘on the cheap’ and used to pitch their tent somewhere every night to save on accommodation. One night they had found a nice pitch and decided to ask the owners whether it was ok with them if they stayed on their land for the night.
So they knocked on the door of what looked like the owners’ house. Another couple opened the door. It turned out they were Germans too. When asked about the possibility of putting up the tent, they answered in their very German way that they had to phone the owners to ask.
While they were still on the phone trying to reach the owners, our friends with the tent just went to the next house. The person opening the door was Irish. He, in a very Irish way, said “sure, why not?” and pointed out the most wind-shielded plot on his land, offered them to use the bathroom in his house, and asked them whether they were interested in breakfast.
Und die Moral von der G’schicht: you have to leave your country to get to know it.
I know you have been waiting for this! Here it goes: Step 4 to “Germanise yourself”!
Today’s German Music Tip Dagobert, Afrika – could not find the title song from the brand new album, so here is the preview of the whole album… What’s hot Operations – over
What’s cold Hospitals
The German word/phrase/verse of the day Durch den Kakao ziehen.
So today was the big day. Got up at around 5:30 to get ready. Left at around 06:30. Was sent back at the “gates” of the operating theatre. It took until lunch time before Pádraig was back up on the ward, and the afternoon to hear the good news from the surgeon that all had gone well and the operation had been a success!
He said we could most likely leave on Saturday – and celebrate Eastern at home.
In case you thought it would – well, it did not happen. The operation. Instead, we spent the morning getting to know the inners of the UKE. They had to do a CT and an EEG to see whether they could go ahead with the operation. This afternoon they told us, for the third time now, that it will all happen tomorrow. – Fingers crossed.
Today, a visitor from Dublin left a little book of mindfulness with us (which I only discovered once she had left – so I couldn’t even thank her in person).
I started, not quite yet in the right spirit, to read it from the back and discovered a thought I really liked. It went like this, more or less: When we are happy, we wish the moment would last. Yet, we know that this happy moment will go away and make room for other life experiences. In the same way, when we are sad or under enormous pressure, we should remember that this experience, these feelings will not last forever either. They too will be replaced by other life experiences.
Just checked that it will be US Magistrate Judge Leo T. Sorokin who will hear our case in the US District Court in front of a jury.
I am going to keep this short tonight but know that you have been waiting for step 3 to germanise yourself!
Good night – keep the candles burning, the good thoughts and prayers going, the healing energy reaching Pádraig.
Loads of preparations for tomorrow’s operation. It’ll be all fine – though there was a bit of a brief scare today, more below (I have to make you keep reading) Watch out for step two to germanise yourself: it’s got to do with normcore). Also loads of preparations on getting a deposition from Pádraig’s doctors in the Schön-Klinik; preparing a mediation meeting for Wednesday (ahead of the trial); and the trial itself – with us going over on 12 April and the trial against the driver of the van starting on 13 April. It’s a civil case we have taken, the police didn’t see a reason to even cite the driver. But it’ll be a jury case and we have been told it will last at least a week. (Today I found out that the Boston Marathon will take place around that time…)
I thought a bit more about what I wrote yesterday. And tried to bring it all a bit more to the point. So here is my second attempt.
√ They are telling us our children are lost causes.
√ They are telling us, our children offer a bad return on investment so they won’t invest in them.
√ They are telling us we should take the money raised by the friends of our children to help us pay for the care the State denies them – and go on a holiday to relax a bit.
√ They are telling us, injuries acquired by our children under their care don’t matter as long as their brains haven’t recovered (which they might not).
“They” are people in charge of neurological rehabilitation in Ireland.
Are they serious? Are they just disillusioned or burnt out? Are they ignorant of advances in their field?
Patients presenting acutely to hospital with moderate to severe brain injury should be routinely followed up to assess their needs for rehabilitation. Intensive intervention appears to lead to earlier gains.
Patients with moderate to severe brain injury who received more intensive rehabilitation had earlier improvements.
√ They should take note of the CONVENTION on the RIGHTS of PERSONS with DISABILITIES of which Article 10 states that:
States Parties reaffirm that every human being has the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others.
√ They should recover their enthusiasm, energy, and empathy that made them choose their profession. And then they should add a pinch of outrage to the mix, outrage at the State that runs our health system; and that took away their verve to do good, to really care.
And then – then, we, together, can start doing what needs to be done and give to our children what they need to get and what is their right to get.
Today, Pádraig had two very short seizures. The first one occurred when the physio was about to start her stuff, so I blamed her. An hour later, a doctor came in and asked me to describe what had happened. So Pádraig showed him. – As his operation is going to happen tomorrow morning, a neurologist came and prescribed some anti-seizure medication, and then sent a message that they want to continue administer anti-seizure medication “peri-operative”. – And then I checked the side effects and caution notes of the antibiotic he was getting against some bacteria in his bladder, and all became crystal clear: tell your doctor if you had brain issues/injuries; seizures can be a side effect. – There were a few really difficult hours until Google lifted the terrible uncertainty. You might ask: why did none of the doctors mention this before, or even after? Sounds like a very sensible question to me ….
Well, if you made it here, you deserve a break. So, here is Step 2 to germanise yourself:
Tomorrow will be one of those big days. Fingers crossed. Candles lit. Mother lining all the angels up for support and to inspire the doctors to do the best job they can possibly do.
Hospi-Tales 