VillageVoice

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!

 

Subversion

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.

 

Signature

“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?

Piece

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.

Cold

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!

Do as little as possible

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.

Swap

We swapped roles and experiences today (kind of).

Pádraig had an absolutely brilliant day out and about the Royal Canal, the railway bridge in Drumcondra and Quinn’s pub, last stop before Croke Park, pre-match. Later on he was listening to the highlight of this year’s sporting calendar, the (gaelic) football final, sitting out in the garden, so he could hear it live (the wind carried the sound from the stadium) and on the wireless. He got a Dublin flag from a street trader and had a couple of ice creams sitting outside in the warm-ish September afternoon, enjoying a thrilling match.

In turn, I had gone back to bed after a late breakfast and slept it all out until late afternoon, trying to get over a cold or a flu or whatever it was that made me feel ancient and useless and without even a bit of energy. What made it all worse was that all the time I felt that I cannot really afford to get a flu or to stay in bed. It’s a frightening thought. A sad one too.

I’m sure, I’ll be over the worst tomorrow.

Understood?

You must know “Despacito“. The song has almost 4 billion views on youtube.

The other day one of Pádraig’s friends said: “Have you listened to the lyrics?”, with an undertone of incredulity that such an overt, well, sensual?, song made it to Number 1 around the world. It’s a great song, full of rhythm, and, because it’s in Spanish, hard to understand for most of us.  I looked it up on the web.

Despacito
Quiero desnudarte a besos despacito
Firmo en las paredes de tu laberinto
Y hacer de tu cuerpo todo un manuscrito (sube, sube, sube)
(Sube, sube)
Quiero ver bailar tu pelo
Quiero ser tu ritmo
Que le enseñes a mi boca
Tus lugares favoritos (favoritos, favoritos baby)

Déjame sobrepasar tus zonas de peligro
Hasta provocar tus gritos
Y que olvides tu apellido (Diridiri, dirididi Daddy)

(In case you missed your Spanish classes in school, you might want to consult google translate or search for the English version:).

It’s pretty clear what the song is all about, though I was surprised that someone would find it a little too explicit. Maybe I’m too old?

I remember what happened when, many years ago, I was driving through Spain in an old VW Beatle and proudly played a song that had been Number 1 in Germany for many months, to my Spanish and Irish friends. It was Bobby Brown by Frank Zappa. My Spanish friends loved the song, my Irish friends couldn’t stop giggling. Eventually, I decided to swap tapes. Now, to my excuse, these were times when PCs did not exist, neither did the internet or the web (to check the lyrics and get them translated:).

Stuff that sounds good, maybe great, or even absolutely amazing can turn out slightly different once you start understanding it, or – if you don’t understand it yourself – once you share it with people who do.

Delicate (T)Issues

The most amazing event in the most amazing venue organised by the most amazing people, tonight brought together people affected by suicide, acquired brain injury and both. For the first time ever in Ireland.

To me, it was like the beginning of a new era, a new movement that would shake things up. And it came from people who had decided that something needed to be done and they did it. That simple. There were no committees, no big inter-organisational meetings, no board, no signed agreements. They just did what they felt needed to be done. It was like a breadth of really really fresh air.

Thank you to the Breslin Family and their Friends who organised this incredible night in support of Pieta House, ABI Ireland, and the An Saol Foundation! Thank you to all who joined us tonight and made this a night to remember!

 

InSafeHands

Thursdays are fun days when Pádraig’s friends come to the house to share with him what is going on in their lives, to have some fun, and packets of biscuits.

So maybe, it wasn’t such a bad idea after all, to service his ceiling hoist – a service that included the super-weight test: having a box full of really heavy weights, making up more than 140kg, being lifted up by the hoist.

Today, the kitchen was packed with his friends for almost four hours, a time full of laughter, jokes, and biscuit eating. You could see, hear and feel the delight of these hours.These were the dreamboaters, the future, the energy and the tomorrow. All in safe hands.