In an absolute rush, about to get to Dublin port for the ferry…

Two absolute VIP treatments today for Pádraig.

One in the amazing splint clinic where a number of highly specialised OTs were trying to build (!) some amazing head support for Pádraig.

The other by the kitchen chef who demonstrated how some really good looking, healthy, and tasty food could be prepared for Pádraig at home. He let me have a go at his really cool equipment. I’m all hooked up and almost feel a business idea coming up here!

Have a look for yourself.

Keep calm.

Like the sea in the doldrums.

The problem is that boats ain’t moving in the doldrums, at least not ‘real’ boats – that is those with a sail.

Never before have I felt so much at the mercy of life and of others as over the past two years.

I’ve written about this feeling of absolute and utter helplessness and sadness that is so difficult to deal with at times. But there is another side to this previously unknown feeling of what seems to be, often, an almost complete dependence on others.

It has got to do with institutional care.

With doors and doors of fridges being locked. With the need of having to ask for almost every essential thing. With autonomy being removed from your life. A lot of that, while I find it difficult to deal with, I understand and can live with – especially if those restrictions are ‘sweetened’ by extremely helpful and understanding people around.

But part of the institutional care is also a momentum (in German I’d call it “Eigendynamik”) that is just there. Things almost happen by themselves, they happen because because that’s the way they are done. They are the system. Like ‘team decisions’ where no individual is responsible for anything anymore. Like medicine that is being given because it’s safer, because it easier, because because everybody gets it. Like treatment or therapy that is not provided because because it’s not worth it. Like procedures that are being done because because they are always done, no matter whether they were done somewhere else before. Like precautions that are introduced when previous experience, if considered and taken seriously, would deem them unnecessary.

This is when common sense and logic are replaced by what Kafka called the “Prozess”, by the “system’s requirements”, by “someone” insisting on something when this “someone” is never identified and most likely doesn’t even exist.

Today was one of these days when I was confronted with the “momentum”.

I know I should remain calm. (And I hope I did, mostly:)

But ships don’t move in the doldrums. Not even the Dreamboat.

It has to be short tonight. I am sooo tired and exhausted and, yes, proud. Of myself, but more so of Pádraig’s friends. Those that ran today and those that were there supporting us.

Here we are after the marathon.

Thank you to Emily and Cliodhna for great company while running, and thank you to his friends for supporting us during the run. Also, thank you to all who supported Clíodhna and Emily who were fundraising for Pádraig!

We all finished and had a great time!

I am completely wrecked. But the fact that I finished proves that anything is possible!

I won’t win the Dublin marathon tomorrow. I won’t even come second. Or third.

I’m hopeless. Right?

Not sure what Pádraig was thinking when I told him today that I’ll be doing the marathon tomorrow. Maybe he got used to the idea of long distance runs where speed is not the issue but perseverance is.

Truth is, I won’t be running to win. But I’ll still be running. Each time I’m ‘running’ one of these marathons I’m so tempted to give up and to just get the bus home. It seems like such an easy way out. It’s when I think my attempts at marathons are just hopeless. – So far, I’ve kept moving. Regardless. So far, I’ve made it to the finishing line. (And I’ve no pride left to loose.)

Marathons are hard, even for slow runners.

The following is harder. As all taboos are. But taboos are like Rumpelstizchen. Once you call them by their name, they first loose their evil force and then they disappear.

I’ve realised, the more I’ve heard people talk about persons with severe brain injury,  that many, including many in health professions, consider them to be hopeless cases. To a point that they believe, and at times say, and at times say it in the presence of a person with a severe ABI, that it might have been better had they died. They mean well…

Of course, affording appropriate and ongoing costly treatment to someone who you believe would have been better off dead doesn’t arise. The only question that arises is how to “maintain” that person. Very often, this involves drugs, tubes, and artificial feeds because, apparently, this keeps down the cost and, in any way, it doesn’t make any difference to the person concerned – at least this seems to be a widespread believe, including in the health professions.

This is the point where I feel like getting my posters and banners out, and setting my social network channels on fire.

Because the thought, never mind the outspoken word, and especially by those supposed to care for and supposed to treat the injured person, that the injured person might have been better off dead, is just not acceptable. Personally, I find it intolerable, even abhorrent.

There are no hopeless cases, no hopeless illnesses, no hopeless injuries – none of us is God. There is no reason whatsoever that could conceivably serve as justification to deny anyone treatment, therapy, or care – and to just “maintain” them. No matter whether a person has cancer. Or a kidney disease. Or cystic fibrosis. Or motor neurone disease. Or a severe acquired brain injury.

I might be a hopeless runner. Persons with a severe acquired brain injury are not hopeless patients. Because they are alive, and they have decided to stay alive.

“Maintenance” is for cars. Not for persons. They deserve more.

PS: If you’d like to meet up for a pint tomorrow after the marathon, meet us in Toners Pub, Baggot Street.

In charge.

What would I do if I was in charge? What would I do if I was in charge of neuro rehab for persons with severe ABI in Ireland?

Changing the way severe ABI is seen. By the professionals. By the public. By families. Making sure that severe ABI is being treated appropriately. On time. As long as it is required. To the extent necesary. These would be my two priorities.

Two people with family members who were treated for their severe ABI in the Ireland’s only specialised hospital told me today that they did not believe this institution was providing the service, support, treatment and therapy that is required by persons with severe brain injuries. So what is the alternative for them and their family members? Pádraig had to leave the country and being back home, health professionals are amazed that he eats and drinks, has no infections or bugs, has no injuries and a healthy skin, has no bed sores, no dropped feet or other injuries, and is not taking any medication.

Weekends are very quiet. This is a long weekend. It’ll be double quiet. There is nothing happening. Patients will have no distraction, they will get no stimulation of their body or their senses. They wake up in the morning to eat and drink and wait for the evening to come.

Pádraig had a quiet day today as everybody else. He had his three meals and went out for a walk. People on the ward were still talking about last night when around half a dozen of his friends visited him. It was great!

Less than 48 hours to go to the marathon. And one extra hour of sleep tonight.

Check out Cliodhna’s and Emily’s marathon fundraising pages for Pádraig!

Did you ever have the feeling you woke up in the morning, you blink, and the next thing: it’s evening and the day is gone?

Today was one of those days.

Quick coffee (decaf – we ran out of ‘normal’), a ‘hello’ to the friendly roofer and off to an early physio session. The first time poor Pádraig had time for breakfast was just after 11am. That was followed by OT, and a relatively straight-forward version of the WHIM assessment (it didn’t include an fMRI).

It was the first time that I saw at least one eye following a mirror from one side to at least the middle, maybe a little up and down too.

It was also the first time that I saw him using a switch with his left foot (there’s a famous Irish person who did an awful lot with ‘My Left Foot’): when asked, he ‘switched’ once, triggering a sound. When asked, he ‘switched’ twice, triggering two of the sounds. When asked, he went through the whole sequence again. And I wish I could remember whether he did it a third time. It was absolutely brilliant. Really, really, really brilliant!

Then there was a late lunch, a walk outside, and a short language therapy session when the therapist decided that he could now drink (thickened) fluids as much as he liked.

Finally, he got a visit by five of his friends – two of them will be running the marathon for him! They are just unbelievable. Talk about ‘beautiful people’! Being so close to his friends and getting visits from them several times a week must make him feel really at ease, loved, supported, energised.

How great it is to be back in Dublin. Truly.

No more apple juice.

I should’ve known. Dentists don’t like sweet stuff. The NRH dentist who checked on Pádraig’s teeth this morning is no exception. The good news is that he was impressed by his teeth and oral hygiene.

This dental appointment was the first of a few Pádraig had today. There also was the ‘sling’ man who is not just going to source not just the correct sling for Pádraig’s super-dooper lifter, but also an interim bed on loan and a quotation for a standing bed.

All this is in preparation by a home visit by the NRH and HSE teams on Wednesday, 04 November.

If all goes according to plan, that’ll also be the day that Pádraig will be back home home and spend a night in his new room. It’ll be just one night to see that all is in order and works, that all fits and is fit for purpose.

It’ll be the special NRH van that will get him home. To be sure that that’ll work, he got a spin this afternoon around the NRH. Everything seemed to be ok in relation to transport.

And then he had two visitors which was brilliant. Old and young – they won’t mind me saying so. And both got big smiles!

Getting Pádraig home is so incredibly complicated and painfully slow. Honestly, I don’t understand why it is all taking that long. More than three weeks into this process, there is no agreed date, not even a provisional one. There’s so many people who have to be brought along, it’s hard to believe. And it’s a real learning experience for all involved.

One thing is absolutely clear and without doubt: all involved couldn’t be nicer, more supportive, understanding, and enthusiastic. All believe that bringing Pádraig home is the right thing to do. All want it make happen.

So, no doubt, there’ll be a date. For home home.

Today, Pádraig and I went on a discovery tour of the NRH. There are places that you are not supposed to enter. One, for example, is the helicopter pad. Not that there have been any helicopters landing here so far.

Another place we discovered is a gym. We only saw it from the outside, from behind re-inforced, thick glass that looked like a fence.

It’s the gym that houses the Lokomat. When we saw it first, it was being used. I didn’t take a picture then. Anyways, the only people who are using it, are people who can stand on their own. It’s such a valuable resource that you have to fulfil certain types of requirements before you are allowed in, so to speak. (If you hear an echo of the ‘return on investment’ mantra here, I wouldn’t blame you.)

I also discovered some extraordinary expertise today in the NRH, as well as follow-up and concern that would be hard to beat.

For example, today’s physio session was like Pilates: it looked really easy, but was, in fact, really hard. There were, during part of that class, three physios and one consultant. A real VIP treat and show of a level and type of expertise I had not encountered anywhere else. – The thing is that the moment Pádraig or anyone else leaves the NRH that will completely and entirely stop. There simply is no appropriate therapy treatment available in what is called the ‘community’, i.e. when Pádraig comes home. (Yes, this is where An Saol will come in.)

For example, the nutritionist is compiling some recipes for when we get home. She found out where we can get ready-made pureed food for Pádraig. And she organised a meeting with the NRH’s cook who will not only help us to get the proper kitchen machines but who will also help me to get some meals ready, just for practice. Where else would you find this?

I read a bit more of the book. And I remember a bit more of what someone at REHACare told me: Sometimes, you could get the expression that health professionals focus on what people cannot do so that they can teach them how to do it – in which case the whole treatment is driven by the health professionals who analyse, diagnose, plan, and implement treatment.

But there is another approach, which would also require a completely different prospective. It’s an approach where the focus is on what a person can do and where that person requires help to do what they can and want to do better. In this case, the whole process is driven by the person concerned, not by the health professional.

I half decided to do a little bit of work every day on An Saol. I most likely will not find the time to do a large amount of work in one go anytime soon, but I will hopefully find the time toto every day just a little bit. Over time, this little bird turn into something bigger and hopefully more substantial.

I started to read a book.

(It’s not by and not about Leo Varadkar, the Irish Minister for Health. There’s more about him further on:).

What’s so special about reading a book you might ask. The thing is that I don’t even manage to read the paper anymore (although I still buy them from time to time, being the eternal optimist I am).

But I had 30 minutes between trains in Hamburg Hauptbahnhof and there was this bookshop. I decided I would buy “Irre – Wir behandeln die Falschen” by Manfred Lütz, the man I heard the other day on the radio. They had one copy left. If that wasn’t a sign of something!

Unfortunately, the trip wasn’t long enough for me to finish it (and now I fear that life might take over again before I do), but what I read so far was really good.

There is one thought he presents that he feels really uncomfortable with, and so do  I. It’s not his thought.

It’s one by psychiatrists Hoche and Binding from the 1920s who supported euthanasia so that society would not have to carry the burden of (mentally) sick people. – A thought not just taken up, but put into practice by the nazis.

It’s one introduced by Nobel Prize winner Watson. Watson proposed that parents of lower intelligence should pay a higher tax if they had children since these children would put a higher burden on society.

The idea is that not all people are equal. The idea is that people have no equal rights. The idea is that not all people should have appropriate access to (health) care. The idea is that not all people should be integrated equally in society. The idea is that not all people should have a “life”.

Sounds familiar? Sounds familiar.

Can’t wait to get really going on An Saol. But we have to get that apartment in Hamburg sorted first and also get Pádraig home. It doesn’t sound like much, but it is *really* complicated.

I am so happy to be back. Hamburg and the apartment were too unreal without Pádraig. It was an empty, deserted place.

Pat has been telling me about the visits he had, about the progress on the plan to get him home, on the therapies he’s getting, on the daily struggle looking after him in a place where he shouldn’t really be anymore.

This morning, I listened to a report on Morning Ireland, RTÉ Radio One, just before the 08:30 news, about the Cross Border Directive.

Nothing got to do with the “North” this time, but with a European Directive that was implemented recently in Ireland which allows you to choose where you are going to be treated within the European Union – including dental treatment, including hip replacements, AND including physio, OT, and speech & language therapy. The HSE will pay for it as long as you are a public patient and as long as the treatment is (at least in theory) available in Ireland.

They interviewed Leo Varadkar, the Irish Minister for Health, who said that he whole-heartedly supported the scheme because it would allow not just for people to get the treatment they needed when they needed it, but it would also allow him to make a case for an increase in the health budget so that people would be able to get the treatment they needed in Ireland, rather than having to travel abroad. – It doesn’t make sense to say there is no money available to spend on treatment here, and then give the money to people for treatment to spend it abroad, he said.

He’s got a point.

Sounds like we got ourselves a new supporter for An Saol!

It feels like I didn’t get anywhere.

Two days of getting two years of ‘stuff’ organised and to me it looks like the day I arrived. Nix changed, nothing.

In the meantime, I’m wondering how Pádraig is doing. Waiting for the phone calls to find out what is going on at home. It must feel a bit like what the rest of the family were experiencing, what his friends must have felt a little like when Pádraig was away from them.

At least I have a plan. (I really like plans. Seriously.)

I’ll be coming back here after the marathon. I’ll drive over, hopefully with Pat. We’ll do another two days of packing. I’ll put stuff on eBay small ads and I’ll ask a second hand shop to take some other stuff away. We’ll then rent a big van and bring stuff we want to keep to Tating and pack the Doblo.

What got me through the day today was the offer of a really nice Irish/German couple here in Hamburg who offered their help to pack the van and to unpack it in Tating.

I feel like I should go on packing. But I can’t face anymore of ‘stuff’. There’s ‘stuff’ everywhere and I have no idea where it came from. Who brought it here? Who got all this? Who thought that we would ever going to use even half of this? Nix da.

Nixt week this day, a few of Pádraig’s friends, as well as myself, will ask ourselves what possessed us that we decided to run this marathon? We won’t be able to walk properly. Our legs will hurt like mad. And we’ll be completely exhausted. (Or am I just talking about myself?:)

There’s something you can do to help Pádraig’s friends: support them. Check out Cliodhna’s  and Emily’s marathon sites. And then, next week, watch them doing the race of their lives!

Because it’s not a sprint. It’s a marathon!

PS 1: Today is the first anniversary of Pegida. It was ‘celebrated’ by a demonstration in Leipzig. 15,000 people participated. 15,000 people participated in a counter-demonstration.

PS 2: The independent candidate for mayor of Cologne who got knifed down by a right wing ‘activist’ and who is now in an artificially induced coma got elected by an absolute majority yesterday.

PS 3: Watching a late night documentary on ZDF, “Wärst Du limber tot?” following the life of six people with disabilities who live in the Senator Neumann House of Behindertenhilfe Hamburg (BHH) – which we visited some time ago and who were about to help us to care for Pádraig in our Hamburg apartment.