There were so many things that caught my eye or ear when we were in Germany. Things that looked and sounded ‘normal’ to any German – unless it was a German who had just come back to live in his ‘Heimat’: you’ll remember the man from the ‘Genossenschaft’ who called to the house in – what would have been considered in Ireland to have been – the middle of the night to remind us to open the windows really wide – not just ‘Kippe’ – every day for as many minutes as the current temperature; 10o C = 10 minutes ‘Lüften’. You’ll also remember that he got stuck when I asked him what to do at -10oC.

Now, the world is not just strange in Germany.

Just two days ago, the Irish Independent reported in an exclusive news flash that restaurants will charge €1 for tap water because of the water charge that the  Government has introduced recently. The commercial rates are, apparently, so sky high that owner cannot possibly be expected any longer to cover the exorbitant price of tap water their clients are drinking. It would just not be fair, they argued, and not sustainable long-term.

Europeans are clearly undercharging for tap water! – Ireland should lead the way for a realistic charge on tap water in restaurants!

I think they are right. Wouldn’t you agree? And it’s worse: first they drink this expensive water (and, because it’s free, they might even have a second glass!), charged at commercial rates by the Council to the poor restaurant owner and then, they most likely go to the toilet creating even more and higher expenses not just because of increased waste water charges, but also because they might, ignorant as they are of the immense cost implications, literally flush huge amounts of money down the toilet!

So, I don’t think restaurant owners are going far enough. In addition to charging for a glass of tap water, they will also have to charge their clients for going to the toilet (unless, maybe, guests agree not to flush), for using plates and cutlery (they already do that in loads of restaurants in Italy anyway), and for getting their table cleaned with a wet cloth.

I know what I am talking about, because I checked: Dublin City Council charges a commercial rate of €1.16 for a cubic metre of water – pure extorsion! I mean, the restaurant owners could not possibly be expected to pay that out of their own pocket. After all, one cubic metre is just a mere 1,000 litres!

A lot of things have changed since Pádraig’s accident, in addition to the water charge.

Each time I hear about a tragedy, I can hardly bear it. Whatever terrible things happen to people, are no longer just ‘news’ that go in one ear and out the other. They all hit my heart. Each time. And there are small things that happen that I find almost unbearable. Like this morning. It was raining and windy when I went to a glass bank, slipped on a piece a really wet wood, and fell. I hurt my backside, my trousers got wet and dirty, and I bruised my hands. But what hurt me beyond my ‘pain threshold’ was not the hurt I felt, but the incredible and unimaginable pain Pádraig must have felt when that car hit him. I know I will, but I haven’t got over that feeling yet. It’s like a huge open wound.

Pádraig was good today. He had an hour’s session in the Erigo (a stand up table with simulated leg movement) and speech therapy later in the day. He continues to use the switch in a very reliable way. Later in the week, he has an appointment in the NRH’s EAT clinic – which has nothing got to do with food or eating, but with ‘electronic assistive technology’. There is so much technology, combined with daily and intensive cognitive and physical training, could do for him!

Family meeting tomorrow with NRH staff where we might hear more about next steps…

PS: Created a basic Facebook page for An Saol and the volunteer meeting on 14 December. Please ‘like’ An Saol! – Got 12 ‘likes’ already since this morning! – And let me know whether you are interested (and have the time) to volunteer in whatever way and from whatever place for An Saol.

It’s the beginning of a New Year, the first Sunday in the calendar of the catholic church.

The first Sunday of Advent, meaning “coming”.

Germans are big into Advent. Advent cakes. Advent candles. Advent reeds. Advent calendars. Advent songs. You name it.

One of Pádraig’s friends came over for a visit today – and brought a home made (by him!) cake – which Pádraig really enjoyed. When Maria came back home from a lifesaving course, she brought buns – which Pádraig won’t be able to enjoy (I just finished them). – Felt like Advent had arrived! At homehome. No comparison to last year, or the one before. Pádraig is living a very different life now!

But there is something else coming – An Saol! Today I heard from two more friends (two I have not met yet) that they are really interested and excited about the idea of getting An Saol going one is a (former) nurse, the other person is a neuro OT. They are joining the more than 20 volunteers who have already signed up and will meet on Monday, 14 December, at 19:00 in the Carmichael Centre. There is still time to sign up here if you can join us that Monday if you can – if you won’t be able to join the meeting for whatever reason, sign up anyway and I’ll be in touch with you directly.

We’re still cleaning up the house, trying to find space for things, unpacking. I’d say we will be for another few weeks.

There’s a good side to every thing – even if it is as unattractive as having to clean and unpack stuff.

Today we found a block of paper covered by a really interesting picture.

It said: Life is all about how you handle Plan B. And I thought Plan B was only for those who are incapable of following their master plan, doing what they really wanted to do. I thought Plan B was for losers, ‘fracasados’, Gescheiterte. Those not smart enough, not strong enough, not determined and not focussed enough. I always thought life was all about how you handle Plan A.

What do you think? Plan A? Or Plan B?

Weekend is chill out time. Getting up a little later than usual. Having visitor calling in. I think Pádraig is really enjoying the days back home home. There’s things going on. There are conversations. Smells – nothing like the smell of burned sausages. And there’s the panic of someone who has to be in town 15 minutes ago, where is my phone, where are my keys, oh no, I can’t find them, could you look, could you give me a lift in, please, I’m going to be late. I had completely forgotten about this manic panic that had been part of our house, of our lives forever. Not in Hamburg though. An while it really gets to my nerves all this panic I’m also enjoying it in a weird way. Because that’s life too. Life isn’t organised. If you think you could control life, it’s time to go and see a psychiatrist.

Which brings me back to life being all about how you handle Plan B. And this is what the other side of this nice picture above said.

Thinking about it…

Life *is* all about how you handle Plan B. It’s about what you do when things don’t go ‘your’ way. It’s about choices: sink or swim? And you know what the Dreamboat did!!!

Riders on the storm. Sitting in our kitchen. In our house. In our town. The double door to the garden wide open. Into the new apartment. The bedroom. With a low light. The ancient sofa bed beside the brand new NRH bed where he is resting. You know that it would be untrue, you know that I would be a liar, if I was to say to you, man, we couldn’t get much higher. When did I listen to The Doors the last time. We are in a completely different world. What Pádraig has shown over the past few weeks is nothing but sensational. Doctors would not really see someone with his injuries after two years. Therapists would long have given up. The lack of return-on-investment attitude would long have stopped any funding and efforts to help, support, discover, assist. Off to palliative care, to maintenance, to making life easy for carers with regulated induced bowl movements, catheters tube feeds, and oxygen via the tracheostomy – when life should be demanding, when we should be pushing boundaries every day, when we should be trying to leave our comfort zone for periods every day.

Martin captured the essence of it all in just a few sentences in a comment to yesterday’s post:

Padraig is showing the potential that has always been there. Others before him were never given the opportunity to show what they could achieve. Nursing homes or community care is what they got where there is little or no therapies for them. An Saol is the way.

19 friends have so far responded to my post of last Saturday, almost a week ago, proposing a plan of action for An Saol and asking you whether you were interested to help and get together (if you had time) to get cracking on the ideas.

I’ll be emailing everybody who signed up with the details of that meeting, but just to let you know now, the meeting will be on Monday, 14 December, 19:00 (location to be confirmed). By the way, it’s not too late to ‘sign-up’, even if you cannot make it to the meeting because you are away or busy that day, or because you do not live in Dublin. Click here to go to the sign-up page.

Pádraig is surprising us and his therapists almost every day.

How can someone, after two years, ‘all of a sudden’ correctly answer relatively complex questions? How can he start to move and start to control his limbs?

The other day, he pushed Pat’s hand to the side as she was giving him food that was just too hot to eat? Today, he picked up a tissue and wiped his mouth  – with a bit of support and guidance, but he did it. He also pushed one of his therapists.

The thing is: you’re not supposed to start doing this such a relatively long time after your accident.

Pádraig is moving into a whole new categories, people tell us.

They don’t know and haven’t understood that Pádraig has ***always*** been in a different category. There’s nothing new here. It’s just now become visible to them:)

Call it what it is. Call a spade a spade.

We have a proposed care plan. We have a proposed equipment list (almost). But we don’t have a therapy plan; not even an outline.

I have learnt that what is being referred to as ‘community’ by social workers, doctors, therapists, and nurses in the NRH is the service provided by the HSE to those living at home, in the community.

For the past eight weeks, Pádraig’s care in the ‘community’ is being prepared. That care does not seem to include any kind of therapy – unless you count good positioning, going for walks, or appropriate eating as therapy. I am talking about physio, OT, music, speech- and language, and cognitive therapies.

We have asked for therapies that would be recommended for Pádraig as well as for therapies that would be offered to Pádraig, but haven’t received straight answers so far.

I would understand if I was told: we have assessed Pádraig’s needs but, unfortunately, we do not have the expertise or the resources to cater for them. That would be straight. It would ‘call a spade a spade’. It would make it clear that something is needed that cannot be supplied. We could then work on changing this unsatisfactory situation – we all. Together.

But, I suppose, it’s not easy to ‘call a spade a spade’. It’s not easy to admit, openly, transparently, honestly, that there is a desperate, undisputed need that is not being covered. Even if that was one first step towards a better health system.

Roll on An Saol!

Want to support, in a very practical way (or ways), An Saol? Sign up here (should you not have done so already). Everybody’s welcome! Let’s call the spades by their name. Let’s provide people with severe ABI with the specialised therapies they require. Let’s sail up the stream. In the Dreamboat!

If you are a Kodaline fan, and even if you aren’t, you could do worse than checking out their new version of Love will set you free as Gaeilge. It’s beautiful. And it’ll be on a new disc to be released by 2fm and Raidio Rí Rá. With a bit of luck, it’ll see the light of day just before Christmas (according to one of Pádraig’s really good friends).

Tuesday is the day of ’rounds’. Not many news but time to ask questions and to clarify things. Then there was a combined OT and physio session where Pádraig started to respond adequately and correctly some quite demanding questions.

In my mind, Pádraig’s case had never been very exceptional, or rare. In my mind, there had always been many young people like him, with a sever traumatic brain injury, who needed the right support and continued care and therapy. We are now hearing that there are very few persons with his ‘profile’, not just in Ireland, but in the world, who would have had the kind of care, therapy, and treatment he received, and who, after more than two years, made such dramatic and spectacular improvements as Pádraig.

What all this means, I don’t know….

Today, we got a copy of a meeting report that the HSE will receive soon. This will inform the person(s) in the HSE responsible for making a decision.  It will happen. there’ no doubt agout it.

Tonight is one of those evenings I can barely keep my eyes open – better finish here for tonight…

When Pat helped Pádraig with is food yesterday, he did something very new and extraordinary: as the spoon touched his lips, he lifted his arm to push Pat’s hand away. The food was too hot!

Isn’t that great?

When I came in this morning I was told that Pádraig had to be suctioned early in the morning, that he had not been great with his breakfast, and that a little later he had vomited. During the day he really seemed to be down, barely responsive, and not at all himself. Nobody understood what was going on. Then we learned late this evening that he had barely slept and had tried to make himself heard as he was uncomfortable. The thought of this, the thought of a night or even hours like this brought up a whole bucket full of emotions. It was the first time this had happened and I hope it won’t happened again any time soon. Just imagine to be in such a situation for a second, minute, hour. The fact that Pádraig is coping makes him an absolute hero in my eyes.

Let’s wish him a good night’s rest. And pray he’ll be able to rests. – He deserves it.

PS: Remember – click here and let me know if you want to help with some concrete work for An Saol.

Around the block.

This weekend the weather was well enough for us to go out for a walk in the afternoon around the block, for the first time. Yesterday, they went down the road towards Drumcondra. Today, we went up the road towards Botanic Rd. and back via Lindsay.

It’s amazing how your perspective on footpaths and roads changes when you’re pushing a wheelchair. Footpaths that are not lowered at the corners making crossing the road a difficult manoeuvre. Gigantic trees growing in the middle of the footpath leaving just about the space needed to pass. Potholes and cracks looking as if a small earthquake had just hit Dublin. But it was brilliant. And it was just the first of many walks around Drumcondra and Glasnevin, and even down to the Botanics or the beach. Nothing like feeling the air, the wind, the sun in your face, hearing cars, people, kids, dogs passing by.

It’s also amazing how being away changes your perspective. It’s when you stop for a moment that you feel how tired and exhausted you really are. It’s also easier to see priorities.

One of these is to get An Saol and its services ‘on the road’. I think there are three items to be worked on in the first instance: a launch, the therapy services, and fundraising. If you want to help with that, click here and let me know!

Back in the NRH tonight, looking at Pádraig’s therapy plan for the coming week, we discovered a ‘team training community session’ preparing the next steps for Pádraig’s move out of the NRH and home, it seems. It all takes its time. But things seem to be moving. Eight weeks ago tonight, we were on the ferry from Cherbourg to Rosslare. Two days later, Pádraig arrived here in the NRH to be assessed for a home care package.

“We don’t choose to be born. But we choose to live.”

“We cannot choose to be born. But can we choose to be free?”

Around the block.

Sitting on a plane again, back to Dublin.

Pádraig is doing fine at home and none of us will have to go for this long drive out and then back to visit him in Dun Laoghaire (as much as I like Dun Laoghaire:) for a day or two.

I’ve been thinking of three things to do for An Saol, to kick it into action.

(1) Launch

I promised myself to launch An Saol in January 2016. That was two years ago. Now, whether it’s going to be in January, or around January won’t make that much of a difference, but I think it would be nice to have a launch event to let everybody know that it’s there and what it is about.

At this event, I would want to show what can be achieved by persons with severe brain injuries with the right support. I would want to make the point that persons with severe brain injuries have the same right as anybody else to live their lives, in dignity and with respect. I would like to celebrate the efforts by so many that made An Saol a reality (music, song, poetry, dance,…). I would like to do this some time in, or shortly after, January.

(2) Therapy Offering (The Sara Walsh Therapy Services)

An Saol has received an extremely generous donation from the parents of Sara Walsh. We got to know Sara and her family in Beaumont and became friends. She went to Pforzheim earlier this year and made tremendous progress. An Saol will offer therapy services for persons with severe brain injuries in her memory. These services will, in the first instance, be led by one qualified and experienced therapist and supported by volunteer therapists (either qualified or student therapists).

We need a job description. We need to circulate that description. We need to interview. We need to employ the most suitable person. I would hope to have that person in place by January.

(3) Fundraising

While An Saol will start offering support and outpatient therapy services, the aim is to find (or build) a suitable building with enough space for day care, in-patient care, and respite care (with a total of around 10 beds).

This will require a significant effort in fundraising and lobbying of government agencies. We will need one (or a small group of) coordinator(s) and many people to spread the word. We will need to set specific goals for the next year and more general goals for the next 3-5 years. We will need to identify and plan fundraising activities.

I thought it might be a good idea to involve the Irish-American community and have started to plan two cycles to raise awareness of Pádraig’s case in the US, and raise the need to establish adequate therapy services and care for persons with severe acquired brain injuries. Both would require a significant organisational and PR effort, and could involve actors, musicians, politicians, and, above all, US-based cycling clubs.

Cycle 1: From Los Angeles/Hollywood to San Francisco/Nappa Valley (approximately one week around Easter)

Cycle 2: From Boston to Brewster/Cape Cod (a few days to arrive on 29 June 2016)

In addition to the above, An Saol will need support for its infrastructure, for example a webmaster, a volunteer coordinator, and a PR/Social Media coordinator, a person or persons working on legal, social, and medical issues.

There have been many who have offered their help for An Saol. It’s time to get going.

If you are interested in any of the plans outlined above (or have your own ideas), let’s meet up. Go to this website to let me know which date would suit you best. If you want to help but cannot meet on any of these dates, or are not in Dublin or Ireland, let  me know too.

Better together!