A few days ago, Pádraig got this new switch that sits between his thumb and index finger. It’s just another sign of the huge progress he is making that he is now able to consistently use his thumb to press that switch. It’s so much lighter, so much less in-the-way than the yellow one he is using at the moment with his foot. It doesn’t beep, it doesn’t give auditory feedback, but it’s connected to the Tobii computer (and its Communicator 5 software).

For the first time, I managed today to add a ‘page set’ (that box with all the pictures in it) and edit an existing one. I’m so proud of myself:)

Tomorrow morning, really early, before the rain and the wind, Pádraig, a HEP and myself be driving up to Wicklow to meet some new Dreamboaters, absolutely mad people: film makers, drone pilots, a professor, and an incredibly nice lady giving us access to her gorgeous house.

I’m not sure what’s going to happen there, but I’m curious and can’t wait to find out.

A friend in Germany told me recently he preferred to read newspaper “Die Zeit” rather than the news journal “Der Spiegel” because “Die Zeit” was “unaufgeregt”. I’ve no idea how to translate this word. To be honest, I didn’t even know that it existed in German. Maybe he just made it up himself?

It means something like “not panicky”, “not headline grabbing”, “un-agitated”, “not excited”. So here was someone who liked his news and his news analysis in a not-excited-way. When I listen to the news these days, and think of my friend, I wonder whether he is listening to the news at all. Or whether he has decided that this is all getting too much.

Pádraig was ‘unaufgeregt’ getting towards the end of his studies, ‘unaufgeregt’ in a good way. Of course, he could get excited and he knew what he wanted. But he had reached that point where he managed to take other people’s bad humour, their temper, their lack of being reasonable, with a smile, maybe just shaking his head in disbelieve.

Now I’m so much older and haven’t managed to reach that state of mind. So I asked someone who knows Pádraig quite well how Pádraig managed to get there. The answer  I got was: Pádraig was happy.

It was that happiness that allowed him to take on life (and people) with a wink in his eyes. To be cool about all the annoying things in life. To be completely and utterly ‘unaufgeregt’, in the best possible sense of the word.

The question is not really if. The question is when.

I’m banging my head against the wall that needs to be knocked. I’m telling anybody and everybody who I can make listen that what is going on is not just unjust but also completely senseless. I make my private life public. I really annoy people who think I should be grateful for what Pádraig is getting rather than highlighting deficiencies. I make a little bit of progress, but really just a little bit. I risk my health and that of those around me because I’m not really paying sufficient attention to the warning signs.

It’s not a question if. It’s when.

Pádraig continues to make progress. Over the weekend, he had his first steak: not minced but cut into (thin) slices. The way I’d like it. And you should have seen how he enjoyed it. In the afternoon, he has a slice of toast (no crusts, those are for me:) with butter which he really enjoys. He smiles when people make (good) jokes. He is able to hold his head when we stand together, even if only for a second – those will become more.

It’s clearly not if. It’s just when.

That wall will come down and if it takes my bloody head that keeps knocking against it. The idea that young people with their lives ahead of them can just be abandoned in nursing homes to rot away or in their homes with just the basic, functional healthcare with no rehab being provided will soon become unacceptable in Ireland. People will not have to give up their own lives completely as a subsequence of a severe acquired brain injury, they will get the support they need to continue and adapt their lives. A fair system will offer help where it is needed.

All this will happen – we just don’t know when.

I’d say: the sooner the better, if we want to avoid even more casualties in these appalling situations.

From the current edition of the German journal “Not”.

22_Kurs_neues_Leben all

When the iconic Village Voice published, after a 62-year long proud record as the “cultural touchstone for the progressive thought”, according to The Guardian, their last print edition last Thursday, they picked a picture of Bob Dylan in Christopher Park near the old Voice offices off Sheridan Square, January 22, 1965, as their cover photo.

They also included images of the “infamous denizens of the downtown realm”, William Burroughs (with sword), the Beastie Boys, Madonna, and Jack Kerouac.

An institution died and disappeared from the streets (and its famous red distribution boxes) passing on into the digital world where it will continue its life.

I’ve often thought that this will, ultimately, be our fate as well: we’ll disappear from the streets and continue life in a digital world where our physical bodies will become superfluous and, eventually, an obstacle in our quest for adventure, excitement, and life style, the good things in life – who would look for the ‘bad’ things?

But here is the problem: life isn’t always good. And it’s being able to deal with the difficult aspects of life that allows us to grow. (Although there is a thin line between ‘growing’ because of a challenge and complete system failure leading to disaster.)

For the first time in months, we had a carer coming in on a Saturday. Although it was only for an hour, it was great and allowed Pádraig to have a shower and spend a bit of time in his standing bed. It allowed one of us to do some work that had to be done today somewhere else.

And last but not least: for the first time since his accident, Pádraig had a bit of steak, cut in fine slices, but not minced!

i’d never thought I’d see the day that a group of people sat outside under a marquee in Dublin’s city centre – knitting socks. That’s a German thing. Not an Irish thing. Definitely not.Has Germany arrived in Ireland? I heard on the radio today that Angela Merkel has replaced the man across the big pond as leader of the free world. Is Germany now funding cultural initiatives around the world to subvert local cultures and replace them by German customs? Starting on Culture Night? Was Culture Night, in fact, initiated by the Germans?

It’s not just Culture Night, its also the autumn equinox. From now on, nights will be longer than days. But just for a while. All part of the ups and downs, the cycle of life. It’s good to know that the longer days will come back. So while it might be a difficult time, it’ll get better. – Even though, tonight, I feel lost.

“Kindness is the language which the deaf can hear and the blind can see.”

This is just one famous quote by the author of the book of which Hemingway once said: “All modern American literature comes from one book by Mark Twain called Huckleberry Finn.”

Samuel Langhorne Clemens, better known by his pen name Mark Twain, also said: “Whenever you find yourself on the side of the majority, it is time to pause and reflect.”

Mark Twain must have been asked for his signature so often in his life that he must have become bored by those repeated requests. Who knows whether he enjoyed all the attention he got when he became famous, or whether it bothered him.

I still can’t quite believe it, but today Pádraig was asked for his signature.

We had asked for some information from a hospital. When I got the call from a nice person working in that hospital telling me that the information was ready to be sent out and had been signed off by the consultant – but that the consultant had asked for Pádraig to sign the request – I didn’t know what to say for a few seconds. I was, as the Germans would say, “sprachlos”, speechless. Had we exaggerated in some way Pádraig’s level of recovery? The consultant surely knew and remembered Pádraig?

But then on second thoughts….

I thought what a brilliant idea that was. Not only did we use the opportunity, again, to speak about this to Pádraig, but it was him who took the decision. And we supported him taking it. If that wasn’t an act of empowerment and inclusion.

Tonight, I’m wondering why I had not thought about this myself?

It’s a mild night in Dublin. I’ve the window open just enough to let a bit of fresh air in and to hear the rain running down a broken plastic pipe somewhere not too far away. I have decided to go to bed earlier and to get a bit more sleep.

What that means is: feeling less tired during the day, clearly and not surprisingly. It also means: I don’t fall asleep the minute my head hits the pillow; and I have dreams so vivid and clear I find it hard to tell whether something happened or whether something was, well, just a dream.

So, in a way, going to sleep is like getting ready for your dreams. Listening to the rain outside and the water hitting that broken pipe. It feels like as if the world could be at peace, this moment. Tonight.

Following a waiting time of nine months, Pádraig today saw two OTs in the CRC’s assisted technology department for about an hour. They were amazed by his progress an we tested a new switch to be used for his Tobii Dynavox. It was a good session – though, and with all due respect, really, on OT would have sufficed and having to wait nine month for this is, without any shadow of a doubt, just unreal.

But rather than dwelling on this, I’ll listen to the rain outside, get ready for my dreams, and believe in a world at peace.

PS: If Kevin should read this – I just corrected ‘the world at piece’ and changed it to ‘the world at peace’. Makes more sense:)

Peace.

Listen to this to start your day and you’ll be alright! Believe me, it works. It turns problems into some insignificant comical stuff. It makes you dance. It makes you happy. And you’ll pretend with Van the Man to be a black singer with a brilliantly deep, dark voice. You’ll find it easier with the daily grind…

Given the pretty dire situation in relation to Pádraig’s care, therapy (except for his excellent, private, physio) and rehabilitation, we have been looking for caring people, professionals with a heart and ambition, who could complement Pádraig’s current rehabilitation programme. We have started to look at the possibility of making a room available to them (not necessarily in our home:) at a cost that would make it feasible for them to move to Dublin.

Because we know that Pádraig’s situation is far from being unique, we hope that once we have identified the right professionals they might be able to move on to An Saol’s Day Centre once that opens. In that case, we would already have worked together and feel confident that we are in the right company.

Tuesday is swimming day, except for today. Both the PA who accompanies us and myself have not recovered enough from the cold/flu to dip into the water. Though these days are probably going to be the last nice days of the autumn in Dublin, pretty mild, sunny, quiet and just lovely, I haven’t been out even for a short walk. Feeling cold and miserable. (Which reminds me of how things are going while trying to see the bright side of life, the bright side of the road.)

I am kind of keeping my distance from Pádraig so as not to pass on my germs to him. It’s a strange feeling to be less involved and I miss it (being involved) and being with him.

Don’t know about you. But when I’m sick, I so much more appreciate my health that I take for granted most of the time. I also feel decades older, pretty useless, and a bit pessimistic. I find it hard to get over this self-pity and keep going. And I’m just talking about a common cold, maybe a bit of a flu, but nothing serious, really.

When all the puzzles look like they fit… there’ll be days like this. There will be!

Don’t spend too much time with one particular person.

This apparently is what at least one community therapist was told by their management.

I just heard this recently, first hand, and I wasn’t surprised. While the blandness of the statement is amazing, it makes perfect sense when you think about it for a minute. There aren’t enough therapists in the community and the ones that are there are generalists, trying to deal with dozens of different conditions. So any attempt to get more time from them for a particular person, even if this person is in desperate need of therapy, will fail. Must fail. In this system.

The lesson: don’t waste your time trying.

Instead: pool your forces of whatever type (political, professional, financial, whatever) to build an alternative. This effort will pay off and will not go wasted. Whoever is out there and wants to help, can help our efforts to build these alternatives, let me know.

Today, Pádraig’s physio called in sick. His PA wasn’t great but didn’t call in sick. And I spent, again, most of the day lying down.

Tomorrow will be another, a better day!

PS: Follow that advice – do as little as possible, ‘fighting’ the system or whatever else. Instead do as much as possible to really make a difference where you can by working on positive change. Sailing down the stream with the Dreamboaters. Working the sails. Leaving ‘systems’ behind on the shore. Soon, we won’t even remember them.