(There was a problem with yesterday’s and the previous day’s blog which is now fixed – so they should be there. Not sure what exactly happened…)

Pádraig has been quite alert again today. He sat out almost 7 hours in the viva-la Thekla today – a record! His eyes were following pictures, Pat showed him from The Journal. He keeps moving his hands, arms, feet, and it trying really hard with his legs too. These are not huge movement, they are small and you can see how hard it is for him to make them. The other encouraging experience has been that I could really feel that he was with me when I was talking to him, telling him about all the great things his friends are doing and planning to do for him – not a few inspired by his incredible determination to get better and to join them again having fun and great company. I did not tell him about the letter that finally arrived from the Department of Health. It’s just too depressing.

This week has been a week of excitement building up for last night’s big “Swim a Mile” event in the National Aquatic Centre (NAC) in Dublin, where Lynn and Irene swam, for the first time in their life, a mile in a competition. In the event, they both finished up with a fantastic under 52 minutes! There are pictures before, during and after later in the blog. Next weekend is another huge event, this time over two days: Snámh Phádraig is going to take place on 12-13 April. It’s not too late to sign up and although the bus is nearly full! 44 swimmers and 2 stewards have signed up so far! Together, the group has already raised an unbelievable €15,000. So, if you decide to join the fun and swim in every county of Ireland with a coast over two days, you can find all the details on how to register here. If you want to support those mad lads, check out there fundraising pages here.

On Thursday, we received a letter by the private secretary to the Minister of Health starts by saying that he is writing because of “the Taoiseach’s request that the Department of Health follow up on specific matters raised by you in relation to Pádraig’s care.” The second paragraph says that the Department is aware of the “significant challenges in the years ahead” and wants “to ensure that all of the resources available (…) are used in the most efficient and effective manner possible.” The third paragraph is a statement of facts: we were concerned that Pádraig was not admitted to the NRH in time, that he is now in Germany, that we should stay in close contact with the NRH, and that an Irish rehab consultant might come for a visit to Germany “as part of a process of international service delivery comparison”. The letter finishes up by saying that “the Department regrets that the Health Services were not better able to meet Pádraig’s needs. The Minister extends every best wish to Pádraig during his ongoing treatment and to you and your family as you continue to care for him.”

I find it difficult to describe my reaction to the letter.

In a way, it was what I expected. But on the other hand, I had hoped against hope it would not have been a letter saying, in short, “it is as it is”. Sad. Where is the care? Where is the vision? Where is the energy? Where does it get “specific”? Where is the action?

If you wanted to see action and feel the energy, the place to be last night was the National Aquatic Centre (NAC). I’ve often thought that older people (sorry Lynn and Irene) are almost a lost cause, and that our future really is with the young people, those with the convictions and energy to affect change. – Well, I was wrong. Lynn and Irene are young at heart, energetic, and very determined. So, after weeks and months of early morning training, last night was their big night. And it was big. Not only did they finish, both finished in under 52 minutes, and they are still counting the vey significant funding they raised for Pádraig. Here are the pictures (listen to today’s “German Music Tip” while watching the pictures:):

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Today’s German Music Tip Ulf und Zwölf, Heute geh’n wir schwimmen. For all the brave swimmers!

What’s hot Swimming
What’s cold The Water, especially in the sea

The German word/phrase/verse of the day
Wasserscheu

Twitter: @forPadraig
http://www.caringforPadraig.org

Well, they did it – and I just got the first picture of the two master champions, immediately after they swam, for the first time in their lives, ever, a full mile in a competition.

Irene, Lynn and Melaine Nocher. They both finished in under 52 minutes. (Melanie did not swim in this competition!

Don’t they look so happy?

Thank you for your enthusiasm, perseverance, and support for Pádraig.

Before you ask – Melanie is an Irish swimmer who competed at the 2012 Summer Olympics in the women’s 100 metro backstroke.

In this picture, she is the one not wearing a swim suit!

 

Coming back to Hamburg was as strange as arriving in Dublin the other day. Aer Lingus changed their schedule to Hamburg from 01 April. They are leaving now at 06:50am which meant I had to get up really early, following a really late night, trying to get everything together and ready before leaving again after just a few days. I was (and am☺) still half asleep when I made my way to the airport and on to a packed plane.

When I got into the hospital and into his room, Pádraig had a new gadget. It’s called ‘Bewegungstherapie für Arme und Beine’ and is a massive kind of cycle without wheels. He’ll be using it regularly now we were told – which is great as it will keep his legs mobile as well as his joints moving. He’ll also be getting more speech therapy since the secretions in his lungs are down, and he is swallowing much better than before – which makes it safer for the therapists to fit a speech valve to his tracheostomy. I might have mentioned before that from next week we’ll have a regular meeting with the physio and OT; we’ll also have a meeting with the speech therapist. As the therapies are happening in the morning to a large extend, when we are not here, it is important to stay in touch with the therapists, just to understand a bit better what they are doing with Pádraig and how well he cooperates. It’ll also make it easier for us to support the work of the therapists when they are not with Pádraig in the afternoon during our visits.

His favourite doctor is also back again. Pádraig was so delighted to see her that he moved his arm and toes, and not just for her but also for his nurse who had not seen any of this before. All of this is really good because the more people see Pádraig moving the better: because he is showing to everyone that he is making progress. Again, nothing dramatic, but slow and steady progress. We heard that the stockings for his legs (and the thrombosis) will finally arrive on Monday.

AND, today his doctor took him off the oxygen altogether from just after noon. Brilliant. Amazingly, he was doing really well. It’s really important that he manages without the oxygen, even for some hours, in order to make it to the rose garden one day!

Snámh Phádraig is just around the corner and I am sure those who are going to do it are getting both, really nervous and really excited.

Tired. Will take an ‘early’ night today and hope to get back into form tomorrow.

Today’s German Music Tip
Tem Bendzko, Am seidenen Faden (2013). Deutscher Musikpreis, Echo, 2014.
“Jeder Atemzug hängt am seidenen Faden.”

What’s hot
Speaking Valve
What’s cold
Winter
The German word/phrase/verse of the day
Heiter bis wolkig.

Twitter: @forPadraig
http://www.caringforPadraig.org

 

Today, the letter from the Department of Health arrived. I read it a couple of times. And again. And was wondering. There was nothing new in it, nothing really concrete, but hints that they understood the situation and had made enquiries about Pádraig’s situation. I’ll have to read it again tomorrow, when I am less tired. It was dated 01 April.

I am going to pre-date this blog, it’s almost 1am and I just discovered that Aer Lingus’ new schedule for flights to Hamburg means that I’ll have to get up just after 5am. It was a really busy day today. Like trying to pack a week into a day. It was really good to see Laura and Maria and to spend some time with them – far too little time it was, but still…

Not too much to report on Pádraig, only that he really seems to be moving to music; which would mean that he hears it, gets the rhythm and then ‘translates’ it into movement. Which is really fantastic and encouraging.

Tomorrow is the big day in the National Aquatic Centre for Lynn and Irene. With a bit of luck, we’ll have some pictures of our master swimmers each achieving new PBs over a mile! Please support them if you can, they are doing something that neither of them had even considered a few months ago.

 

 

Now that April Fool’s Day is over, let’s focus again on what this is all really about. Back to basics.

We met with Pádraig’s physio and OT and made real progress. We attended a physio/OT session and then talked about the kind of person Pádraig is, with loads of energy and determination and stubbornness, especially when there is something to aim for that is worth his while. There is nothing like a good challenge to get him going. So today, he started to use a kind of ‘bicycle’ without the wheels, but still requiring him to pedal – and when he doesn’t a little ‘engine’ kicks in and does the ‘cycling’ for him. It’s kind of a slightly more sophisticated model of what they were trying in Beaumont, if you were ever there to see it. He seemed to enjoy it and took the exercise really well.

We’re now going to have a weekly meeting with the physio and OT to see what their plan is for the week, exchange the progress we have observed, and see whether there is anything we can help with.

In the evening, before we leave, we play the Marino Waltz for him. Guess what, one evening he moved his head from one to the other side in the rhythm of the waltz. Now, it could all have been coincidence – but it certainly was not imagined. You will remember that Pádraig gets music therapy a few times a week. Today, the music therapist said he had been looking for us, because Pádraig had move his hand with the music. We told him about the concerts Pádraig loved and enjoyed so much, and that many groups knew him – it wasn’t easy not to see him in the crowd near the stage.

I’m back in Ireland for a number of meetings and work. I have no words to describe how I feel. So great to see Laura and Maria. The hammocks are swinging empty between the trees at the back of the garden, the cat doesn’t recognize me anymore, Pádraig’s room is there as if nothing had happened, I can see and hear him on the sofa, really comfortable under a blanket, telling me that he is watching a movie and that if I want to watch the news, I can watch them upstairs – having brought him a glass of milk. Cold. What would I give for a bit of a row about the remote. And the emersion that had, again, been left on. Why are you always blaming me???

Don’t forget the ‘swim a mile‘ event this coming Friday, in Dublin’s National Aquatic Centre (NAC), at 7pm. Here is a taste of what is going to happen, from an email Fergal sent to Swim Ireland (before you ask, I did ask him whether it was ok to publish it:) –

I am the husband of Lynn Fitzmaurice who is swimming the mile on Friday in the NAC.  The reason I am emailing you is to make you aware that both Lynn and Irene Clonan, two mothers of children who swim with Atlantis Swimming Club, are both doing this challenge in order to raise some money for Padraig Schaler.  I assume you like most of the Irish swimming fraternity have heard about the accident that Padraig was involved in during the summer of 2013 and his subsequent treatment (http://caringforpadraig.org/).

Lynn (my wife) did not take up this challenge easily.  In fact I registered her for the Swim a Mile as her Christmas present (Romantic Ireland  is dead and gone).  Her first attempt at swimming was in early January in Finglas pool where she attempted to put her face in the water.  I encouraged her to move her arms and legs, words fail to describe how her first attempt at swimming looked but she did  provide much amusement to the staff and other swimmers.  On another occasion in the NAC, I explained to her that she had to breath, kick and pull.  All went well until she realised that she had to do all 3 at the same time.  That session had some tears. Despite all this she has stayed determined, trained 3 times a week and I know she will complete the Mile on Friday evening.

Irene Clonan is another mother of Atlantis swimmers.  While she did a small bit of swimming in her teenage years her return to the pool was also a big challenge for her.  However she applied the same focus in her swimming as she does as club secretary for Atlantis Swimming Club.  For her the Swim a Mile challenge is a step on the way to doing the Liffey Swim this year. Irene has been training hard and has done 3 sessions a week in the pool usually at 5am along with the clubs competitive swimmers.   

Both Lynn and Irene are both hoping to raise a few euro for Padraig Schaler.  I am hoping that you will allow me to record and photograph (ipad) some of their swim so that I can email the recording to the Schaler family.  Reinhard Schaler was our club Treasurer up until a few months ago and Padraig’s sister Maria is a member of Atlantis. 

If you know anyone who is interested in sponsoring either of them you can get them to email me at either: ffitzmaurice@msn.com  or fitzhistorical@hotmail.com 

Both Irene and Lynn are looking forward to Friday evening and I think the way Swim Ireland has encouraged people to take up this challenge is great. 

Kind regards

Fergal Fitzmaurice

I know what it is like to swim I mile: I tried on Sandymount Beach last spring during a sea swim and failed miserably! Good luck and heartfelt thanks to Lynn and Irene! They are heroes!

 

“My number is a public number, you can call me anytime” Taoiseach Enda Kenny said than two weeks ago. “People in other countries find it difficult to find out how to get in touch with their prime minister” – not so the citizen’s of Ireland. Though he admits that sometimes he cannot take all the calls.

Seriously, here is the recording (with apologies for the low volume – he said it in a place far away):

 

 

 

 

 

 

Since it was 22 days today that the Taoiseach wrote to us with an assurance that the Department of Health would get in touch with us ‘without delay’, I thought I’d take him by the word. So I was looking for his number – sadly, someone had removed it from Facebook. Now, I can’t call him. But he wonder, would he call me? – 087-6736414 is my number. He can call me anytime. Sometimes I might not be able to answer, when I am with Pádraig, but if he left a message, I’d called him back straight away.

Today, I took up the Taoiseach on his offer to talk to him directly.

Let’s roll up our sleeves and do it.

Here are three simple steps of action.

1. The Department of Health and the consultants in charge of looking after patients with acquired brain injury (ABI) must recognize that “this broken health system” (Minister Reilly) is not delivering the early neurological rehabilitation treatment needed by ABI patients when they need it – despite the fact that they have a right to this treatment under a variety of human rights and European declarations, conventions, and laws. None of the current plans and strategies will change this. – On 10 March in a letter to the family, and on 26 March in an answer to a question put to him in the Dáil, the Taoiseach promised to get the Department of Health to contact the family “without delay”. (Three weeks later, this has not happened.)

2. According to the Neurological Alliance of Ireland, “there is an urgent need for immediate investment by government in post acute rehabilitation services and rehabilitation services across the spectrum of services to provide timely and equitable rehabilitation for those patients with complex disabilities and their carers or families all over Ireland.” This need should be addressed immediately by a pilot facility to be set up in 2014, followed by a permanent central facility in 2015, with satellite facilities across the country being established in 2016. The Department of Health and the HSE should finance and support such a development.

3. We are more than willing to get involved and drive such a development, together with other families and ABI patients. Having experienced, and suffered, the current system, there is no one more motivated, experienced and knowledgable to make this happen with the support of enthusiastic medical staff and advocacy organisations in the field. Mentorship partnerships should be established with world-leading health professionals and existing facilities abroad, such as the Therapiezentrum Burgau, established in 1988 by the German Entrepreneur Max Schuster when he could not find an existing early and intensive specialized rehabilitation clinic for his daughter who had acquired a severe brain injury in a traffic accident. Today, this initiative provides adequate, comprehensive, and close-to-home care for brain injured patients all over Bavaria (Germany), with 700 beds distributed across the different regions of the federal state of Bavaria.

“It is time for change. It is time for a revolution in rehabilitation.” Not our words but those of the person appointed by the Government of Ireland and the HSE as the National Director of Clinical Strategy and Programmes, Dr Áine Carroll (Irish Examiner, 03.02.2011).

Let’s roll up our sleeves and do it.

It’s one of the great stories Jon Krakauer investigated and published in a Hiking Magazine before gathering them into an amazing book. Then someone turned it into the most romantic, heroic, and epic film I know. Into the Wild is right up there with Easy Rider (even if you don’t like the film, just close your eyes and listen to the music!) and Into the West (again, great music and a really pathetic, romantic and moving story line). Christopher J. McCandless (February 12, 1968 – August 1992) was an American wanderer who died near Denali National Park after hiking alone into the Alaskan wilderness with little food or equipment, living in an abandoned bus in the middle of nowhere. This is the short version. The longer version is much more exciting.

Just to demonstrate what a close knitted and agreeing family we are: I have tried for years to organize a really amazing and romantic evening of film and longing, watching films that start with Into…, only to be told to shut up and hand over the remote control. There is nothing quite like a lovely, tender-caring family. So, here I am writing, listening to RTE Gold playing Crosby, Stills, Nash & Young, The Byrds, and Steppenwolf, Robbie Robertson and The Band, and Roger McGuinn. Here I am, the last of the romantic. And longing.

I never played that music to Pádraig, and when I tried, it didn’t really go down that well. You can imagine my amazement when I discovered he was reading Into the Wild with a really good friend on Cape Cod, and the friend was reading it to him in the ICU. So the plan is to get Pádraig ready to go onto this trip. To Alaska. (I kind of discussed it with his friend, and I think he might join us – that is if Pádraig and his friend will allow me to join them:) Klick here to see where we’ll be going.

It was incredible today to see the effort Pádraig was making. Over the past few days, he had rested: really low pulse, very quiet. Today, we found out what he had been doing. Gathering his strength to get ready. He moved his feet and toes, and trying very very hard to lift up one of his legs. The latter didn’t work out quite yet, but he is clearly getting there. You could see the effort in his whole body. We called in his nurse to show her and together we watched how Pádraig was trying to move so very hard. He even moved his left hand and arm, his eyes were open, and there was a great presence there. – And then, for no reason, the nurse started to talk about this weird movie with a story back from the eighties, apparently a true story, of this lad that left everything behind, this movie she had watched by accident one night, at home, on her own, and she so like it! Isn’t that strange and wonderful? Today was a turning point, one of those days when I know that Pádraig will make it – into the Wild.

Today’s German Music Tip
Helene Fischer, Atemlos durch die Nacht (2013). No – I don’t like this song, but Helene Fischer is one, if not the most prominent singer. The music – it’s like what my parents would have listened to 30 years ago during their holidays on Mallorca. This song has almost 4m clicks on youtube. A lot of grandchildren must have spend long afternoons with their grandparents, showing them how youtube works!

What’s hot
Alaska
What’s cold
Helene Fischer
The German word/phrase/verse of the day
Labskaus

Twitter: @forPadraig
http://www.caringforPadraig.org

Kids write mother’s day cards. So did ours. And before you ask, they don’t write father’s day cards.

One year, our two daughters bought and signed a card for Pat, which Pádraig signed as well. He had been extremely busy with all sorts of other really important and urgent things, and had not managed to get his own cards. His name was very obviously written on the card with a different pen, just added at last minute. Or rather, second last minute. Because the real last minute action on the card was the scribbling out of Pádraig’s name. The girls had bought the card, and they would not get this last-minute-brother get in on the game. – Another year, Pádraig got his own card, saying something about the nicest mam in the world! Just to make sure that Pat appreciated the trouble he’d gone into getting this card, he noted that he had spent hours finding a card saying ‘mam’, rather than ‘mom’!

Those were the happy times.

Today wasn’t.

Though, Pádraig is doing well, in the big scheme of things. Last night, he held up his head for quite some time all by himself. We play the Marino Waltz by the Dubliners to him most nights. Last night it looked like as if he was moving his head in the rhythm of that tune. He is also very stable physically. We are hopeful of things to come.

I’ll keep it short tonight. Read yesterday’s press release if you haven’t.

There was a lovely fundraiser last night, which I hadn’t been aware of. See the picture! Thank you, Aodhán!

PRESS RELEASE
Dublin, 29 March 2016; 13:15 IST
For immediate release

Ireland Celebrates Neuro-Rehab Services – Pádraig returns to Ireland

Staff Reporter
Ireland is celebrating the opening of the new 235-bed National Rehabilitation Hospital and a 25-bed acute neurorehabilitation unit in Beaumont Hospital (both referred to originally in a publication with a foreword by Minister of Health, Mary Hearney).

This follows a radical overhaul of the Irish neurological rehabilitation system, the “revolution in rehabilitation“ called for by National Director of Clinical Strategy and Programmes, Dr Áine Carroll, in 2011.

In addition, the Department of Health, together with ABI patients and their families, celebrated the first anniversary of the community-based, long-term and intensive neurological rehabilitation centres run by the ABI Network in Dublin, Galway, Cork, and Letterkenny. They were established following an intensive period of consultations between the Department of Health, the Neurological Alliance Ireland, and ABI patients and families.

In a surprise development, Apple and Google had decided to provide funding for the centers established by the ABI Netork stating (actual figures, not direct quotes, from Ireland’s top business website Finfacts):

We in Apple paid just $713m in overseas corporation tax on foreign profits of $36.87bn in our 2012 fiscal year ending last September. That’s a tax rate of just 1.9%. So we decided to give a little dig out to our Irish friends working for neurological rehabilitation. Brain injury can hit anyone, at anytime. We want to do our bit to help those who most need it.

Google had a foreign tax rate of just 4.4% in 2012 and it provided for foreign tax of $358m in 2012 compared with $2.5bn in the US, thanks to our Irish friends. Anyone can be affected by a brain injury at any time, just out of the blue. It’s a terrible injury and so hard to live with. We wanted to give something back to our friends in Ireland, and especially to those most in need.

 In a letter to the parents of Pádraig Schaler, a young Gaeilgeoir (23) who was virtually emigrated to Germany by his Irish Health System because it could not provide adequate treatment for him in his own country, the Taoiseach had stated two years ago:

“Thank you for your letter regarding your family’s experience with the health system in Ireland. My office has discussed the details of the letter with the Department of Health and I am after asking the Department’s officials to get in contact with you without delay. The anger, dissatisfaction and frustration that you feel are clear and understood. You are right that Pádraig should be able to receive care here in his own country, the place where his parents and friends live. But, as your experiences show, the health system that we have here at the moment is unsatisfactory; it is not able to provide health care for its patients when they need it most.”

At the celebrations today, the Taoiseach stated:

“So for a change, this new health service will be ready and waiting if you and your family need it.” We are happy that Pádraig can now return to the country that he loves so much and to his friends who staid with him in his German exile. We are also so happy to see his family reunited in their Dublin home, a family that was sadly split into two when Pádraig’s parents had to spend time with their son in Germany.

For more information, contact:

• The Department of the Taoiseach, Government Buildings, Upper Merrion Street, Dublin 2.
• The Department of Health, Hawkins House, Hawkins Street, Dublin1.
• ABI Network ℅ caringforpadraig@gmail.com, 087-6736414

———————— ENDS ——————–

Sadly, the above is fiction, an imaginary, future press release from the year 2016. In the meantime, it’s day 19 of our wait to be contacted by James Reilly’s Department of Health, following the Taoiseach’s request to get in touch “without delay”.

Interestingly, the quotes in the press release are correct with two exceptions: the last statement from the Taoiseach is from a letter sent to us on 10 March 2014 (just the bit in “quotes” though, I made up the rest), and while the “statements” by Apple and Google contain the correct figures in relation to the companies’ tax rate etc. (as reported by Finfacts), their statements in support of the ABI Network were in fact not issued by the companies, yet. – It should be stated that I am writing this on an Apple computer and gather the data using Google. What an irony.

Today, the reality of rehabilitation services in Ireland is, sadly, still a scandal and a horror for those depending on it. Even worse: we as a country seem to have given up hope that these services could ever be brought up to a level that would be even close to that of our European neighbours.

Mr Macey said that neurorehabilitation services in Ireland are recognised to be the worst in Europe. And even if the improvements being sought were implemented, they would still be worse than those in any other European country with the exception of the UK.

“For example, we currently have 7 consultants to serve specialist neurorehabilitation needs across the whole country. But even if we had 50 we would still have the lowest number per capita in Europe with the exception of the UK. And if it increased to 150, we would still be behind countries like Estonia, Latvia, Czech Republic, Croatia and Serbia.

“In other words, what we are really aspiring to is not to have services that any country could be proud of, or even services that are mediocre – but to be the second worst country in Europe for neurorehabilitation.

(Extract from a Press Release by the Neurological Alliance of Ireland, dated 20.02.2013)

Instead, it seems that the Government is happy not just to emigrate its unemployed, but also its sick. Here is another extract from a press release by the Neurological Alliance Ireland (NAI), of 01. May 2013:

NAI Development Manager, Ms Rogers, said that although the Government blames the economic collapse for the failure to improve services, many cost-free proposals in its national neurorehabilitation policy published at the end of 2011 still haven’t been implemented. “We’re almost halfway into the three year lifespan of the policy and not only has the crucial implementation plan not been published – the Government still hasn’t even set up an implementation group.” Speaking on the launch video for the RED CARD campaign, supported by members of Sunday’s winning Dublin GAA team, Emma Rogan, a young person with multiple sclerosis, said: “As a young person with a neurological condition in Ireland I am afraid for my future. People have said to me that the best thing you can do if you are diagnosed with a neurological condition in this country is to emigrate”.

Now – what kind of indictment of our government is this? For how much longer will we tolerate that, in addition to the unemployed, we now also emigrate our sick people?

Finally, to the most important part of this rather (with apologies) long blog: Pádraig is doing well. There have been no dramatic changes in his condition, but steady progress. He is still moving, for example his tongue, his hand, his foot, when we ask him to do so. He opens his eye when we come into his room and talk to him. He has started to swallow much much better, to a point that when his carers try to take out subglottic secretions (which he should swallow), they find very little (because he is swallowing so much better). His legs are still bandaged because of the clot in his left leg, but his special stockings have been fitted and ordered, and they should arrive any day now. As will his specially-made wheelchair. The roses are showing their first buds, the date in the rose garden is getting closer.

It cannot continue like this. What we want is change.

I lived my life twice. Moving to Ireland made me re-live much of my earlier life for a second time: at the beginning I wasn’t sure whether I had understood correctly but then there was no doubt: homosexuality was a criminal offense, condoms were sold by Trinity Student Union illegally, Nell McCafferty and her friends were bringing them down to Dublin from the North, abortion was exported to England, divorce non-existent.

Today, investment in neurorehab is a human right, but a bad investment. We just cannot afford more than three beds, for the whole country. To reduce waiting time, we reduce the time that patients are being treated. To three months. That should be enough.

When I meet James Reilly and his officials, ‘without delay’, I will tell them, with a dignified sense of urgency, that the country will have adequate neurorehabilitation facilities. Whether he wants it or not. It will have these services exactly because providing this service to those who suffer most is an ethical imperative.

Someone who knew what she was talking about mentioned Kant in this context recently. In his Groundwork of the Metaphysic of Morals, Kant posited the “counter-utilitarian idea that there is a difference between preferences and values and that considerations of individual rights temper calculations of aggregate utility”, a concept that is an axiom in economics: “Everything has either a price or a dignity. Whatever has a price can be replaced by something else as its equivalent; on the other hand, whatever is above all price, and therefore admits of no equivalent, has a dignity. But that which constitutes the condition under which alone something can be an end in itself does not have mere relative worth, i.e., price, but an intrinsic worth, i.e., a dignity” (p. 53).

The care for those amongst us who most need it does not have a price. It is a question of dignity.

Perceiving it as a bad investment to care for old people (who are going to die soon anyway), very sick people in hospices (they will be dying of their decease very soon and cannot be healed) or patients like Pádraig (with very severe brain injuries who require urgent early neuro rehabilitation) is either utilitarian, or daft, or barbarian.

We have not seen Pádraig’s oxygen levels as high and his pulse so low for a long time. I is totally relaxed having been looked after by a nurse that really knows him and really cares for him. The difference that this makes in incredible. He also had an old (no offense:) friend visiting him, bringing Gaeilge into Pádraig’s room again. We all fell Pádraig’s presence, his ear for interesting and not-so-interesting things. His nurse has booked a dentist to call in next week (a dentist, imagine!) because she is worried about some of his teeth. Now, how nice is that? I remember the answer we got in Beaumont when we asked for a dentist. The question itself was beyond comprehension in Pádraig’s circumstances. A dentist?

Today’s German Music Tip
Jazzkantine, Im Frühtau zu Berge (2012). Really very different version of an old German folk song.

Werft ab alle Sorgen und Qual,
Falera
Kommt mit auf die Höhen aus dem Tal,
Falera
Wir sind hinaus gegangen
Den Sonnenschein zu fangen
Kommt mit und versucht es doch selbst einmal.

What’s hot
Dentist
What’s cold
Utalitarianism

The German word/phrase/verse of the day
Schmuckstück

Twitter: @forPadraig
#caringforPadraig
http://www.caringforPadraig.org

When I woke up, the world was my oyster. I went out to the beach in front of the hotel and joined friends and colleagues for an early morning workout. This was bliss. I had never been in Sanya before and I began to like it although it was really very different from anything I had ever experienced before. The conference I had been invited to was going well, my talk about Skyfall (yes, I did play Adele’s song and showed a few stills from the movie) was well received. Little did I know how this day, exactly nine month ago today, was going to end.

23,673,600 seconds, 394,560 minutes, 6576 hours, 274 days, 39 weeks.

At around one o’clock, Pat rang. Two hours later I had booked flights and a car. At 8am I was leaving Sanya. I stopped eating, my stomach was not taking in any food. For days, weeks.

I rang Cape Cod Hospital. The nurses were too nice. What had happened to Pádraig must have been devastating.

They were talking about organ donations. The insurance declined cover following dozens of phone calls costing hundreds of euro.

Friends and Irish doctors helped us to get Pádraig admitted to the country’s centre of excellence for neuro surgery. There was a hold up because another young Irish man who had had a terrible accident in Thailand was also going to arrive. When his arrival was delayed, we got the green light.

A Learjet brought Pádraig, heavily sedated, with duck tape holding his head against the stretcher, his legs also taped together, via Goose Bay and Iceland to Dublin. He had survived.

We never ever would have thought that four months later there would be another flight, this time leaving his country not by choice but because of the scandalous lack of neuro rehab and the threat of serious injury.

Pádraig is making progress, painfully slow, but he his most definitely getting better. His doctors, nurses, and therapists are amongst the best in Europe and they have access to the resources they require. The system here works. Not always – and we would have many ideas about how it could be improved – but it works most of the time. That alone significantly reduces the pain, the stress.

Pádraig has been in Germany for more than four months. He had three operations on his lung, and a SIRS/Sepsis that nearly killed him. But he is a fighter, he is young, he is stubborn, he has no patience, he is determined to show to all of us what you can do if you really put your mind to it. And that’s is exactly what he is doing.

Thank you for staying with him. Thank you for your tremendous support. In so many different ways. He could not do this on his own, we could not do this on our own. For me, apart from the obvious, the past few months have been a lesson in solidarity, compassion, generosity and love to a level that I never thought would be possible.