“You treat a disease, you win, you lose. You treat a person, I’ll guarantee you’ll win.” (Patch Adams)

Today could be a good day. It’s Sunday. The sun is shining. It’s warm outside and spring is turning into summer.

I just read a few short articles about what physicians consider to be the difference between curing and healing. I am trying to find out more about this topic after one health care professional told me that in England, doctors are (or were?) not allowed to work with patients who they could not cure. One of the world’s best known neuro hospitals was founded originally as the hospital for the incurables – it is now known as the Royal Hospital for Neuro-disabilities, in Putney, London. When we talked and listened to health care executives in Ireland over the past months, they were making the argument that patients with severe or very severe acquired brain injuries were very costly to look after. In circumstances were health budgets have been cut every year, the remaining funds had to be allocated very carefully, these executives said. They concluded, that it was those who had the best chances of recovery had to be looked after first. In other words, and these are mine, there is no funding to look after the ‘incurables’ other than being put into ‘maintenance’, meaning inadequate and damaging maintenance in acute hospitals or nursing homes.

Today, Pádraig frightened us. He had vomited yesterday and this afternoon it looked like as if that had caused him some problems, together with the heat up in his room. We could watch his temperature going up. His heart beat frequently went above 120, even 130. There were loads of secretions making it difficult for him to keep good oxygen levels. There is a big blister on his left foot, the side with the thrombosis where he is wearing a ‘custom made’ stocking. There was nothing really critical about the situation, but since he had been so stable physically over the past weeks if not months, we were all very worried, including the staff and doctors. They took several samples and got them into a lab so that we would have the results tomorrow. Pádraig was really struggling. We were hugging him to make him feel more comfortable, to let him know that we were with him and that there was no reason to be afraid. There is a slight chance of pneumonia caused by some ‘aspiration’ when he vomited, i.e. vomit getting into his lungs. In this case, he will be put straight away on a powerful antibiotic…

Here is my proposal: Let’s nick something that by now has been proven to work. From the Germans (they deserve it). It’s the idea that even (!) severely brain injured patients have a right to adequate and timely care – anything else is “unethical” and “grotesque” – that’s what German consultants said when they heard that Pádraig was to be ‘kept’ in an acute hospital in Ireland most likely for longer than a year. I will learn how these patients should best be looked after, and I will work with our Irish friends to start a small and viable investment in people who most need our help. Our “return” on that investment will be their and their family’s well being, them being healed even if not being cured. We will need loads of volunteers and supporters to make this happen: everywhere. In the HSE, in the Department of Health, amongst health professionals, designers, architects, trades people, land owners, bloggers, letter writers.

I had a long discussion today with a good friend about ethics. About what is right and what is wrong. This is the right thing to do (even if it involves nicking something from the Germans). Writing all this down and committing to it does make this a good day, with the sun shining straight into my heart and mind! Bring on the summer.

Today’s German Music Tip
Die Prinzen, Alles Nur Geklaut (1993) – It’s not always a bad thing to nick something. And if you thought Conchita Wurst was the first woman with a beard singing on stage, watch the video for ‘Alles nur Geklaut’ (All just nicked).
What’s hot
To nick ideas (if they’re worth it)
What’s cold
Staying still (that’s never worth it)
The German word/phrase/verse of the day
Klauen

Pádraig didn’t show any big reaction when I went back to see him today, after almost a week of work-related travel. I had really missed him, the time with him, so different from all the ‘worries’ of my ordinary life. We spend a few hours together this morning, me doing most of the talking. Telling him about what I had been doing for the past week, thinking after a while that listening to this must be soooo boring, so I stopped. In a way, not saying much, just being together, was what I had missed.

He was sitting in his ‘new’ (2nd hand) Danish wheelchair which, apparently, still does not fit him. Someone had put a neck support and the helmet on, and his head was supported on both sides so it couldn’t fall. Safe, I suppose, but very warm and sweaty. His nurse came in and brought some Nutela and orange juice. Together, we gave him a fast of both which he enjoyed. He also tolerated the speech valve very well today. Three hours wheelchair, two hours speech valve. Something  he would not have bee able for some weeks ago. In the afternoon, Pat came in and tried to get him to move his hands and feet, asking him to move each left and right hands and feet – which he did quite well. He even maintained his hand fully open when moving it.

Just found some great lyrics from one of Pádraig’s favourite songs:

And I know it’s hard when you’re falling down
And it’s a long way up when you hit the ground
Get up now, get up, get up now.

I guess that’s what it is all about.

Today’s German Music Tip
Christina Stürmer, Millionen Lichter (2013) – wie Du und ich…
What’s hot
Getting up
What’s cold
Falling down
The German word/phrase/verse of the day
Baustoffrecycling – a thoroughly mixed up word on a truck I saw today…

You can walk down the aisle without getting knocked over. At 300km/hour. You get your favourite newspaper and your favourite coffee served to your seat. You can access the internet (though here you need to be patient:) and cover the 600km from Mannheim in the south of Germany to Hamburg in just over 4 hours. On ‘green’ electricity. It’s not surprising that I wouldn’t have got a seat, had my friend not reserved one well in advance I managed to eventually buy the ticket. I am getting all nostalgic thinking about Iarnród Éireann, Irish Rail, and the good auld Limerick train. I knew most of the people on that train, some of them by name, some became friends over the years. I was following the conductor’s golf tours through Spain, and had great conversations with American tourist about their search for their ancestral homes. The Intercity-Express, or ICE, is – despite all the jokes about ‘Deutsche Bahn’ – a fantastic train. You wonder what would have happened to house prices and the economy in general if a high-speed train network had been built in Ireland…

Pádraig today did not tolerate the speech valve that well and they had to time short that he could use it. I suppose there are good days and bad days. He also did not sit out because the physio was by herself and needs a second person to assist her to move Pádraig into the wheelchair.  On the positive side (which is what we are all focusing on!) he really seems to have maintained his ‘sweet tooth’ and taste: when someone today wet his lips and tongue with some sweet stuff, his tongue and mouth really got going.

Before I forget: I wanted to thank my friends in the CNGL @ DCU for the coffee morning they organised for Pádraig yesterday morning, special thanks to Laura all who brought in all of these really nice looking cakes!

Another thought crossed my mind recently: when I came to Ireland in the second half of the 1980s, a lot of the issues that had been ‘issues’ in the Germany I grew up in, became issues in my new ‘Heimat’. One after the other: the de-criminalisation of condoms and other means of contraception; the de-criminalisation of homosexuality (though even I am not old enough to remember that having been an issue in Germany); the divorce referendum; and the heated discussion around abortion. Now people in Germany tell me that 20 years ago, adequate rehab and, especially, neuro-rehab services were not readily available in the country. People who had the means and the ‘get-up-and-go’ brought their family member in need of neuro rehab services to Switzerland.

Maybe now is the time to share the lessons learned around early neuro rehab in countries such as Germany and build an adequate service in Ireland. Pádraig’s experience and that of many other young patients who spent months, some of them years, in an acute hospital, were then treated – if they were lucky – for a very short period of time, just a few months, in the NRH, just to be returned to an acute ward or to a nursing home, without adequate care and therapies – this experience has to end and should never be repeated.

Knowing that families of young brain injured patients are worried out of their mind for their loved once because they see that, instead of receiving adequate care and therapy in adequate surroundings, they are left semi-abondaned and semi-forgotten about by the ‘system’ (because they are considered to be a ‘bad investment’), and not doing anything about it, is shameful.

Would you support the setting up of a house where severely brain injured young people could be cared for adequately? Would you help us with a campaign to raise awareness, to secure funding, and to convince the relevant agencies to support this initiative?

What do you think? What does your family, your friends think? Could that be a ‘go’?

We can’t bring the ICE to Ireland, but we can change the way people are being looked after when they most need our help.

I started this blog when Pádraig and I arrived in Hamburg on 11 November 2013. Many people have asked me if I knew who has been reading the blog, how many people have been following our story. Some of our friends have made comments and posted their own views and stories on the blog, so you know them. I had a look around to see could I find out more, and here is some information. First, the countries from which readers came, in order of number of hits.

And here are some numbers.

• 53,845 – the number of total views
• 1.071 – the number of comments
• 1,074 – the number of views for the most read blog
• 665 – the number of followers
• 192- the number of posts

Pat is back in Hamburg. I am back in Germany but went to the south for work. Back to Hamburg tomorrow. Can’t wait. Pádraig apparently has been doing quite well with the speech valve, so well that the nurse was going to talk to the speech therapist to see could he not use it for longer periods. There is also a new (second hand) wheelchair which, we think, might be the one we have been waiting for – but it seems that, while better, still doesn’t fit Pádraig well.

Another first happened today: Pat was talking to Pádraig, she touched his face with her finger, and asked him why he did not ever smile anymore – and both Maria and Pat, sitting on different sides of the bed, were sure that he smiled. He is on the right road. It’s a slow moving road. It has its own rules. But it leads in the right direction.

I have been up since 5am and feel like as if had escaped my physical being. It’s like slipping out of the perceived world into a space and time that functions using completely different rules. It was a full day, with loads of things happening. It’s time to relax the mind, sleep, rest, and get back to Hamburg tomorrow night, to see Pádraig again on Saturday, hopefully with a smile on his face.

There’s an evenin’ haze settlin’ over the town, starlight by the edge of the creek. The buyin’ power of the proletariat’s gone down,
money’s gettin’ shallow and weak. The place I love best is a sweet memory, it’s a new path that we trod. – Dylan often numbers his songs, like this one, the Workingman’s Blues #2. Over the 17 years I have been travelling on this train to the West, I prepared classes, read, made friends, listened to music. When Modern Times was released in 2006, the Workingman’s Blues was my favourite. I listened to it when I was cycling to the train station through wind and rain in the dark hours of the morning, and I listened to it again on my way back home – often having lost the feel for the day, they were so long and so packed that, in a strange way, the day at times felt like one. You are dearer to me than myself as you yourself can see. Today, I wasn’t on the train. I was driving back to Dublin. I had picked up my ‘Limerick bicycle’ from Colbert Station, had put it into the boot. This 20-year-old bike had been waiting for me at the station for so many years, now it is no longer needed. I’m listenin’ to the steel rails hum, got both eyes tight shut. Now I was driving. When the radio played Workingman’s Blues #2, it felt like skyfall. This was not the end, but it was the end of my cycle, train, cycle routine after almost two decades. Now, I’m sailin’ on back, ready for the long haul, tossed by the winds and the seas.

Today, Maria was with Pádraig. He had the speech valve on twice and was dealing with it really well. So good to see him getting more and more used to the speech valve and to at least half-way normal breathing.

Meet me at the bottom, don’t lag behind
Bring me my boots and shoes
You can hang back or fight your best on the front line
Sing a little bit of these workingman’s blues

We won’t hang back but fight our best. For Pádraig.

Today’s German Music Tip
Manic Street Preachers, Europa Geht Durch Mich (featuring Nina Goss) – english/german song with a really great video
What’s hot
Fight your best
What’s cold
the blues
The German word/phrase/verse of the day
Wo soll das Alles enden?

Just heard about Lucid Dreaming a short while ago. It’s when you consciously enter and control, or direct your dreams. You’ll easily find loads of tips on the web about how to do this. I had never heard about the term and that you could actually learn how to do it. But I’ve done it. And it was wonderful Have you? It happens to me during those rare moments when I am not fully awake and not fully asleep either. I become aware of the dream and can ‘move’ it into a certain direction. It’s an amazing experience, there is nothing I cannot do.

It beats another night sitting in this small room on the UL campus, thankfully the last night on my own here. Back to Dublin tomorrow. Off on Thursday night to Germany for work and on to Hamburg on Friday night. It all feels a bit unreal. Could be a dream. Though not one of those that I control.

Patrick is well, wheelchair, speech valve. What is he dreaming of these days?

Today’s German Music Tip
Horowitz plays Schumann’s Träumerei in Moscow
What’s hot
Dreams you can control
What’s cold
Reality you can’t
The German word/phrase/verse of the day
Der Traum ist der beste Beweis dafür, dass wir nicht so fest in unsere Haut eingeschlossen sind, als es scheint. (Friedrich Hebel)

Grab the edge of daily life, and rip it to shreds.

Pat’s sister is with Pádraig while Pat and I are involved in exams and a Summer School. Yesterday, she told him a story and at the end he took her hand and lifted it up to his face. It’s the first time both of us have been away for a few days, nothing we could do about it. It is so strange though. And so lonely.

Ciara wrote a poem and kindly allowed me to share it with you. Thank you, Ciara.

Suan Eile

Bhí mé i mo chodladh nuair a thit tú –
mo shúile dúnta dall ar an uafás a bhí i ndán.

Más féidir leatsa ‘bheith leagtha níl riail nó dlí ar domhan.

Bhí mé i mo chodladh nuair a thit tú –
‘s níor dhúisigh mé ón tromluí fós.

D’iarraidh greim a fháil ar choirnéal an lae,
é a stróiceadh i dhá leath ‘s léim chuig do thaobh.

Ó éirím go dtí go luím go dtí
go dtitim i mo chodladh, smaoiním

ar an lá gur thit tú,
nuair a chuaigh tú a chodladh

‘s nach bhfuil ciall le tada ó shin.

*

A different slumber

I was sleeping when you fell-
my eyes shut tight to the sorrow in store.

All’s strange and unnatural,
in a world where you’ve been hurt.

I was sleeping when you fell –
and I woke to a long living nightmare.

I want to grab the edge of daily life,
rip it to shreds, and fly to your side.

From my wake to my sleep and all in
between I am always thinking

of the moment when you fell
and were sent to your slumber

and nothing matters since.

*

Grab the edge of daily life, and rip it to shreds.

Sitting in a small room, tired, listening to, watching a long-haired guy in a wooly jumper 44 years ago playing the guitar and singing, one of the best voices ever, “I’m goin’ to Carolina in my mind“, a song about homesickness. I am not homesick, but I too want to go back to “Carolina”, and I know I won’t be able to, ever. Every day, I am going back, in time, in my mind. How can I live in the presence when the presence hurts so much? Music that made me want to sing and dance, now makes me cry. Should I stop listening to music altogether, when it hurts so much? – The truth is that the hurt will never go away. It’ll be part of my life. But I will continue to listen to music, I’ll be going back to “Carolina” in my mind, and I will work on a better future. I’ll be concentrating on what is important. Focus on the essential. I’ll be getting rid of junk and de-clutter, and do one thing (for a change) and do that well. It’ll be a process and last for a few months, but I’ll get there.

It’ll be the right thing to do. The OBVIOUS.

Not too many news from Pádraig today. Sundays are quiet days. A rest from the wheelchair. A rest from the MOTOMed-viva-2. Just the speech valve for a bit over an hour. Almost no additional oxygen and breathing fine.

The recording suddenly stops shortly after the opening verses of the last song:
Well the sun is surely sinking down, but the moon is slowly rising.
So this old world must still be spinning round and I still love you.

Today’s German Music Tip
James Morrison & Nelly Furtado – Broken Strings, auf Deutsch: “Kaputte Saiten”. – How did this get 1.4m hits?

What’s hot
The realisation that life hurts
What’s cold
When you can’t deal with it

The German word/phrase/verse of the day
Scheich von Katar steigt bei Deutscher Bank ein (there is a double-meaning…)

Yesterday, I had picked up a tweet with a link to the programme Rónán Beo@3 on RTÉ Raidió na Gaeltachta in which Rónán interviewed Marcus Mac Conghail earlier this week about Pádraig and the poem he wrote about him.  Today, I received a copy of this week’s edition of Seachtain, the Irish language supplement that comes with the Irish Independent. It’s a short article on Pádraig with Marcus Mac Conghail’s poem “Pádraig”.

What Marcus said on the programme and the poem he wrote and read, had quite an effect on Pat and myself. It really made us aware of the inspiration that Pádraig is for so many people. It also made it clear to us that we need to put our energy into helping and caring for Pádraig, but also to try and do a bit more: to continue working on the three issues I promised I would work on months ago: the insurance issue for students going on a J1 to the US; the terrible lack of neuro-rehab facilities in Ireland, especially for severe ‘cases’; and the way that cyclists are perceived by many drivers in the US. We have made some progress, but not enough by a long shot.

Pádraig today continued with the Giro d’Schön – he is close to getting the pink jersey, so well is he doing! Same with the speech valve. We would never have thought this possible just a few weeks back. He is swallowing really well most of the time as well – an important prerequisite when considering the removal of the tracheostomy. Today, he also moved his tongue, hands, and feet following a request to do so. Compared to not so long ago, there is quite a bit of communication going on. The next big thing we would like to see is a way for Pádraig to let us know, in some way, whether he agrees or disagrees with something. It would make such a big difference. While this is not possible yet, the day will come; and I have the feeling that this day is not too far away.

The Leinster Open Sea Swimming website today have a very kind note about Pádraig on their home page. In that note they highlight that both Pádraig and myself participated actively in Open Sea Swimming – what they did not say is that Pádraig, at least once, won as a newcomer an Open Sea Swimming event (to the horror of the established senior swimmers:) while I did not quite as well (we won’t go into details here:). By the way, if you think that picture looks a bit frightening (just imagine you’d be one of the swimmers) you are right! Swimming in the Irish Sea is no joke – as the 50 ‘Snamhs’ can vouch for. Thank you to the Leinster Open Sea Swimming Committee for their support!

Don’t forget: the next event on the calendar is the Dublin Women’s Mini Marathon at the beginning of June, followed just a few days later by the Mountain Flag Challenge.

If you’re looking for good music: Try the 1991 full recording of the San Francisco concert by Crosby, Stills, and Nash (I am yours, you are mine, you are what you are). They sang in Woodstock, and they are still going strong! Another one, slightly different style, is the Moody Blues in the Royal Albert Hall. The first four minutes are a bit slow, orchestral, but then… excellent music, way beyond Nights in White Satin… Watch 19:30: The Story in Your Eyes –

Listen to the tide slowly turning
Wash all our heartaches away
We’re part of the fire that is burning
And from the ashes we can build another day

Today’s German Music Tip
Revolverheld – Ich werd’ die Welt verändern (2009)
Ich werd die Welt verändern
Werd endlich alles besser machen
Werd anfangen wieder klarzukommen
und mal über mich selber lachen
http://lyricstranslate.com/en/ich-werd-die-welt-veraendern-i-will-change-world.html
What’s hot
Change where you can
What’s cold
Trying to change the world

The German word/phrase/verse of the day
“Bayern München feiert das Double” (Bayern won the German Cup Final against Dortmund tonight but only in extra time and following a bad decision by the referee.)

Marcus Mac Conghaile wrote a poem about Pádraig, called ‘Pádraig’, which I posted on 25 April. Two days ago, Marcus was on Rónán Beo@3, an afternoon radio programme on RTÉ Raidió na Gaeltachta, and talked to Rónán about Pádraig, who he never met. It was another day I so regretted not being able to understand, never mind speak, Irish. Pat helped me, and it was another one of those moments, we kept swallowing our tears. Even if you don’t understand Irish (like myself), it’s worth listening to. – Thank you to Aonghus Ó hAlmhain, @aonghusoha, who tweeted about the programme!

Pádraig today had another busy day: physio therapy, sitting out in the wheelchair for 2-3 hours, speech valve for a bit longer than an hour, music therapy, and the Giro d’Schön on the MOTOMed-viva-2. He is doing well physically, and getting into a good shape. He needs much less oxygen than ever, and never has those crisis moments anymore when the level of oxygens dropped to a point that the staff started to panic and get really worried. What we hope is that with his physical better-being his brain will also become more active and engaged. We can feel that he is with us, the staff and therapists are telling us that Pádraig is connecting and collaborating; especially his music therapist is working really well with him. One thing he started to do is kissing Pat good-night before we leave.

Thank you again, Rónán, for keeping Pádraig’s story on everybody’s mind, thank you, Marcus, for speaking in such a lovely way about Pádraig. I suppose, we, I, would never heard about how much his friends love him had it not been for this terrible accident. I suppose, also, that he will be terribly embarrassed when he hears one day when people are saying about him.

I have been thinking what I, what we will be doing and should be doing next, how to continue, how to live our lives. Pádraig has touched so many people – and they have touched me. Cian made sure that I’d ‘run’ the Hamburg Marathon by telling me he’d join me. It’s the stories and the poetry that will channel the energy to keep the action going.

There is Rebecca Storm singing “Those were the days” on the Late Late Show. Time to go.