#RithPhádraig

Some of you will meet up in the Conradh tomorrow just after noon (from 12:15) to run/walk the Mini Marathon for Padraig. You’ll pick up a special t-shirt there that Eileen has organised for you and you’ll get ready for the start at 2pm. You’ll start at Bagoot Street, just off Fitzwilliam St, and return back via Nutley Lane and the Stillorgan Rd to Fitzwilliam St Upper. After the race, back to the Conradh – and some refreshments to look forward to!

We’ll make this the first truly Pan-national Euro Dublin-Hamburg Flora Women’s Marathon and join you, a thousand miles away, walking and running the distance, with you in spirit!

Pádraig was good today, almost three hours on the Speech Valve without any trouble whatsoever, and almost 40 minutes on the MOTOMed2. Great oxygen saturation, without any additional oxygen in all of the afternoon. Great swallowing too. If he continues this way, he should be able to get on without additional oxygen help some day, and without the tracheostomy. And with the physical well-being will come a continued recovery of his level of alertness. No doubt.

I just checked the Facebook page Run the Mini Marathon For Pádraig where Carmel left a really important comment: Don’t forget suncream! – which reminded me of Baz Luhrmann’s song, in which he agrees, addressing the class of ’99:

Wear sunscreen
If I could offer you only one tip for the future, sunscreen would be it
The long-term benefits of sunscreen have been proved by scientists

He continues:

Don’t worry about the future
Or know that worrying is as effective as trying to solve an algebra equation by chewing bubble gum
The real troubles in your life are apt to be things that never crossed your worried mind

Enjoy your body, use it every way you can
Don’t be afraid of it or what other people think of it
It’s the greatest instrument you’ll ever own

Dance

Even if you have nowhere to do it but your own living room

He doesn’t say anything about running of walking – but I am sure he’d agree that it is a great way to keep fit and enjoy life, as long as you don’t forget the sunscreen! 🙂 And, I am also sure, there’ll be an opportunity to dance, you won’t have to do it in your own living room, there’ll be plenty of space in the Conradh!

I’d like to thank all who organised the ‘run for Pádraig’ event and all who participate; and I’d like to join Eileen Kennedy when she says on the FB page for the event: “I hope you all enjoy the Day!”

Today’s German Music Tip
Achim Reichel – Aloha Heja He (1991). Achim Reichel is a singer/songwriter from Hamburg and played with “The Rattles” who were opening for The Beatles on their last European Tour in 1966. When I found the song, I kind of liked it until I saw a live version of it (starts at around 2:05m)… “Hab die ganze Welt gesehn von Singapur bis Aberdeen” – that only rhymes in German.
What’s hot
Running and Dancing
What’s cold
Sunburn
The German word/phrase/verse of the day
Mukke

Martin Niemöller (1892-1984) was a protestant pastor and social activist. In a speech/poem from 1946, he points out that when you see injustice done you better do something – even if that injustice does not affect you (yet). Because if you don’t, there will be nobody left to help you when you need help. Fighting injustice is a moral and ethical obligation.  (See below for the full quote by Niemöller.)

“We can’t judge the past” said the speaker for the dioceses yesterday when he was interviewed by RTÉ News just beside the field in Tuam where two boys, playing, had lifted the slab covering a disused septic tank. What they discovered was horrific: the tiny bones and skulls of nearly 800 infants between 2 days and 4 years old, stacked up 9 feet deep in the tank.

Donal O’Keeffe reports in today’s thejournal.ie how Father Flanagan – yes, THE Father Flanagan – told a public meeting in Cork’s Savoy Cinema in 1946 (the same year Niemöller wrote his speech/poem): “You are the people who permit your children and the children of your communities to go into these institutions of punishment. You can do something about it”; he called Ireland’s institutions “a disgrace to the nation”. O’Keeffe also reports how the then Minister of Justice, Gerald Boland, reacted in the Dail to Father Flanagan’s call for action. The Minister said, “I was not disposed to take any notice of what Monsignor Flanagan said while he was in this country, because his statements were so exaggerated that I did not think people would attach any importance to them.”

I do think (and maybe it’s the German in me) that we can judge the past.

Forógra na Poblachta, the Proclamation of the Irish Republic from 1916, gave a promise to cherish “all the children of the nation equally”.

When our sons and daughters look back and ask us what we did to afford the right to proper and timely health care to people with severe acquired brain injury, what we did to assure that they were equally cherished and treated with dignity – we should be able to say “all that we could”.

Pádraig was well today. He cycled his 3km Giro d’Schön and was in good form, considering the circumstances.

His story seems to get quite a bit of visibility on Facebook. One of his friends in Kentucky, USA, sent us an email to say that a friend of hers, interested in Ireland and stories from Ireland, had received a FB recommendation to read this blog… Another person who became really interested is the owner of an Irish Pub in Hamburg, Paddy’s, who we look forward to meet some day soon. He is organising a fundraiser for Caring for Padraig.

Which brings me to next Monday and Saturday: Monday will see a large number of women, ‘drag queens’ and other ‘shady characters’ running what’s called, completely inappropriately – I’m sure you’d agree, a “marathon”. I ask you, who’d ever heard of a ‘women’s marathon’, and one of 10km??? The poor auld Greeks who ran the ‘marathon’ must turn in their graves!!! I would have love to be there, just for the fun of it! – PLEASE support the runners! Never mind whether it’s runners, walkers, women, or wanna-bees!  They’re all great! Check it out here.

Finally, also check out the Mountain Flag Challenge! If you never put your flag up on top of a mountain – this is your chance!!! This day week, friends or mine will face the Mountain Flag Challenge for Pádraig. Join them and check out the details here.

By Martin Niemöller
Als die Nazis die Kommunisten holten,
habe ich geschwiegen;
ich war ja kein Kommunist.

Als sie die Sozialdemokraten einsperrten,
habe ich geschwiegen;
ich war ja kein Sozialdemokrat.

Als sie die Gewerkschafter holten,
habe ich nicht protestiert;
ich war ja kein Gewerkschafter.

Als sie die Juden holten,
habe ich geschwiegen;
ich war ja kein Jude.

Als sie mich holten,
gab es keinen mehr,
der protestieren konnte.

When the Nazis came for the communists,
I remained silent;
I was not a communist.

When they locked up the social democrats,
I remained silent;
I was not a social democrat.

When they came for the trade unionists,
I did not speak out;
I was not a trade unionist.

When they came for the Jews,
I remained silent;
I wasn’t a Jew.

When they came for me,
there was no one left to speak out.

At times the future disappears.

Future: something to look forward to, some plan, can’t wait for it to happen. Drive, School, College, Travel, Friends, Dance, Songs.

Suddenly, without a warning, the future disappears into a big black hole.

Where is it gone? What will happen to us without it? Will it come back? How can the future come back?

Is it all like what it feels? Could it be that the future never disappears, but that I, at times, just shine the dark light of grief and desperation on it?

The future is the prayers and thoughts, the closeness, the love and the compassion of friends, the energy in this big, loud, LOUD shout across the land and the sea to Hamburg for Pádraig: Happy Birthday! Lá Breithe Sona! This year will be yours!

The incredible presents, birthday cards, text messages, good wishes on the blog, emails,… it’s OBVIOUS how much love there is for Pádraig and that this love, some day soon in the future, will lift him out of the place where he is now. An Saol! It’s Pádraig’s!

Today’s German Music Tip
DIE APOKALYPTISCHEN REITER – Freiheit Gleichheit Brüderlichkeit. Slightly disturbing German Heavy Metal on eternal current affairs.
What’s hot
Future
What’s cold
Black holes
The German word/phrase/verse of the day
Echtzeit

The happiest day of my life.

24 years ago.

When you were born.

A happy day.

A year ago.

When we exchanged hugs and kisses.

On Parnell Square. North.

Finished College. Sad to leave.

On your way to Boston. Can’t wait. Never could.

Next time I saw you, you did not see me.

30 hours East of China. They were so kind I was frightened.

A happy sad day.

Today. 24. Can’t stay forever young.

We are lost in time. Worried about our dreams. Praying for our future.

Seagulls. On Parnell Square. North. In Hyannis. Harbour at the break of down. In Beaumont. Always. Flying over Hamburg. Calling you to come back. Soon.

“The light at the end of the tunnel is the light of an oncoming train.” One of my favourite cynical jokes.

Here is some real light at the end of the tunnel. Here is what I am planning to send to people to see the light at the end of the tunnel, the light that means life. Let me know what you think.

An Saol

Our son Pádraig had just turned 23 and finished college, when he was hit by a 4.3 ton van on 27 June 2013 as he cycled to work on Cape Cod, where he had planned to spend the summer on a J1 visa.

He acquired a very severe brain injury and has been in a coma ever since. From one second to the next, his life and ours had changed dramatically.

When we brought him home from the US to Ireland, we discovered that there was no place where he could receive adequate and timely neurological rehabilitation care and therapy. We were told that caring for patients with severe brain injuries is a costly long-term commitment, and one that was not provided by the Irish Health Care system. We learned that patients like Pádraig were kept in inadequate acute hospital wards or in nursing homes for the elderly, where this stay was normally interrupted only by a once-off and short-term care and therapy stay in the National Rehabilitation Hospital (NRH) in Dun Laoghaire.

In desperation, we moved Pádraig to Germany where we found a working and established system that was responsive and supportive. We learned that patients such as Pádraig and their families can be offered the care, the therapies, and the support they need in a dignified and respectful environment. We learned that it is possible and necessary to provide adequate and timely support for patients such as Pádraig. We became acutely aware that all societies have a duty of care and an obligation to look after their most vulnerable members; because a devastating brain injury does not change or lessen the value and the rights of that person.

This is why we have decided to establish An Saol, a house where young people with severe and very severe acquired brain injuries can be cared for and receive all adequate and reasonable care and therapies they require. These patients will not have to be in an acute hospital for prolonged periods of time when that is not necessary, and they will not have to be moved to nursing homes mainly catering for the elderly.

An Saol will offer, in addition to a small, possibly 6-10-bed facility for in-patients, day-care and out-patient neurological rehabilitation and care, especially for younger patients with severe brain injuries. We will prepare a viable business plan for An Saol, try to get the support of all relevant government offices and agencies, as well as the relevant interest groups. Our aim is to open An Saol on 01 January 2016.

Pádraig was fine today, some visitors from my German family came up from a small village near Münster. It was really nice to see how he connected with them, how he visibly and undoubtedly communicated with them. So present, so alert. While he was not in the wheelchair, he was sitting up in his bed, almost like in an armchair. Most of the day, from 9am to around 7pm, he managed without additional oxygen.

Tomorrow is, of course, his birthday. It’s also Father’s Day in Germany. And it’s Ascension Thursday (Ascension Sunday in a few days in Ireland:). Even in thoroughly protestant Hamburg it’s a public holiday, with all shops closed, and a day off for most.

Today’s German Music Tip
Revolverheld, Ich lass für Dich das Licht an – the song all radio stations play all day long in Hamburg. Tonight, I watched the video for the first time. Wenn wir nachts nach Hause gehen, die Lippen rot vom Rotwein… youth, love, future. Sadness.
What’s hot
Light
What’s cold
Darkness
The German word/phrase/verse of the day
Mensch, mir ist ein Licht aufgegangen!

Hugs yesterday, a good-bye kiss today – what an effort! Besos y abrazos.

A nurse who had not seen Pádraig for a couple of weeks was back today and said she couldn’t believe how well he looked, sitting in his ‘new’ wheelchair, without extra oxygen. He also moved his feet, a number of times, for the senior doctor; and the music therapist. Now that he can move his left foot and his right foot when asked, we were thinking whether we should try left foot for ‘yes’, right foot for ‘no’ – but this might still be a bit much to expect. He hasn’t used the speech valve for a number of days, not exactly sure why, but I guess they’re taking it easy after the stomach upset last Saturday – it would be dangerous to get food from an upset stomach into the lungs for risk of infections.

It’s eleven months since the accident today. At this time eleven months ago, I was frantically booking tickets, hiring a car on the other side of the world, packing my bags, in a haze, checking out of a hotel on a South China Sea island at 5am, with everyone else being fast asleep, except a young receptionist who told me about her small religious community who, she said, would pray for my son, my family, and myself, she said that it all would turn out well, it was the beginning of an out-of-body experience, of no sleep, of no food, of life in a daze, a trip around the world in 30 hours, the flushing of whatever was left in my body when I saw Pádraig in the ICU for the first time, everybody being so kind I knew Pádraig was not well, not well, not well at all, then waiting and hoping, then praying and pleading for him to wake up in the next hour, the next day, the next, and the next. Waiting. Panicking. Despairing. Hours, days, nights, all merged into one. Walks to Hyannis Harbour just before the break of dawn with Pat, when the nurses turned Pádraig around, not being able to talk to each other about what was going on, not being able to grasp reality. Seagulls. What will we do. We can’t stay here. – Can’t believe that it will just be another months and we’ll be starting to count the time after year one.

Have you ever taught a language with native speakers in your class? Or any other subject, and noticed that there was one or several people in the class who knew more about some of the stuff you were going to teach than yourself? Or students who were several decades older than yourself, like the age of your parents, with tons of life experience you were afraid they wanted to share? It’s every teacher’s and professional’s nightmare, coming in as the ‘expert’ only to find that there are people who at least look like they might be contesting your role. When that first happened to me, I was terrified. I tried double-hard to show that *I* was the expert, that *I* knew everything worth knowing, I filled the powerpoint slides with (mostly useless) facts, and tried to show off so that immediately see that they could only loose should they even dream of taking me on in my role as the expert teacher or professional. – Now, today, being older and wiser, I enjoy teaching people who know a lot, because I see it as an opportunity to learn more myself. What surprised me a lot was how much the ‘expert’ students enjoyed sharing their experience and knowledge with their fellow-students and with myself. They never thought about challenging me as the ‘teacher’. Over the past (almost) eleven months, I have practically lived in ICUs and in hospitals, four of them, in three different countries and on two continents. And after all that time, and all these places, I feel that I know a bit about Pádraig’s care. Above all, I know the patient, Pádraig, better than any nurse, therapist or doctor. Today was one of these days, when I realised that even when you know a lot, you can always learn more. When we left last night, we were worried. Pádraig’s ‘Werte’ were not so good, his heartbeat up high, his temperature had gone up, and he was struggling with the oxygen supply – could have been signs of an imminent infection. Today, when we arrived, everything had returned to ‘normal’. Even better, he was breathing by himself, no extra oxygen supply. And then his nurse asked whether we wanted to hug Pádraig, giving him abrazos fuertes – instead of faking this feeling with soft (but essentially ‘dead’) constructions of cushions and blankets around him. The idea was to make him feel really comfortable and protected. You would not believe the effect this had on Pádraig. He completely relaxed, his heart beat went really low, he managed to breathe without added oxygen all afternoon, and he looked like he was really enjoying this feeling of closeness. I very much doubt that this ‘therapy’ is part of ‘what the doctor ordered’. But it worked wonders. As does the ‘Blasentee’ which they give him instead of water, to keep his bladder working ok. – Just two examples of real good care. Much beyond, I would suspect, of what traditional doctors would proscribe and what streamlined healthcare systems would recommend. A good day all around. Today’s German Music TipMax Herre feat. Philipp Poisel, Wolke 7What’s hot Abrazos fuertes What’s cold Abstand The German word/phrase/verse of the day Drei Dinge helfen, die Mühseligkeiten des Lebens zu tragen: Die Hoffnung, der Schlaf und das Lachen. (I. Kant)

“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.