Alright

No idea where this day went. It just disappeared into thin air. I have a list of what happened: PAs arrived at 7am, the speech and language therapist (SLT) at 9am, physio at 10.30, massage at 11.30, lunch at 12.30, TG4 film crew 13.30, music therapy at 4pm, friends at 6pm, TG4 film crew left at about 8pm, camera man at 9pm. The camera man very kindly left me some pretty cool camera to film our adventures on the camino!

Tomorrow will be easy and straight forward in comparison. Ferry will leave at 8.45. We’ll drive about 2 hours to get to the manufacturing plant for Pádraig’s Mountain Trike specially manufactured wheelchair. With a bit of luck we’ll catch the fast ferry back a around 5pm to arrive back in Dublin at 7pm.

To be honest: my head is spinning a bit but I’m sure it’ll all sort itself out and all will be just alright.

Confirmed

Got the confirmation today that Pádraig’s new all-terrain wheelchair will be ready by Thursday. We’ll have to collect it in England, just over 2 hours’ drive from Holyhead to make sure it’ll fit him and to be able to make any last adjustments if needs be. It’ll be a long day but after that we’ll hopefully be ready to go on that big adventure and pilgrimage

In case you missed it, as I did, there was an article in last Wednesday’s The Herald reporting, again, on the bed closures in the NRH, together with a statement by the HSE saying there are plans to change things for the better in their 2017 Service Plan. Mmmhhhhhh….

IndependenceDay

It’s  Easter Monday and it’s Independence Day.
Two brilliant things happened today.

First, two of Pádraig’s friends came by and went out with him on a walk. I thought they’d never come back, it seemed so long. From what I heard, they had a really good time and are planning a follow-up with a variation on the theme of ‘independence’. Really, we (the old guys) don’t have to be involved. We’re not indispensable. We’re not really needed. At least not all the time. A strange-feeling and absolutely brilliant and makes-me-so-happy realisation. I guess it is good for all of us to have us around, but we can (should!) also have an independent life. All of us.

Then, Pádraig’s sister re-activated his Facebook page because the plan is to have im sending messages out to his friends and getting messages and stuff called ‘likes’ (I think) from them. I don’t know what the page looks like (never really did, thinking about it), but the idea of getting back online to me sounds and feels like another huge step of getting back into life. An Saol. Dreamboaters Ahoy!

EasterSunday

Went out to see the ceremony on O’Connell Street – which we missed, but where President Michael D. shook Pádraig’s hand –  had something to eat in the Greshams, and walked back up to Glasnevin cemetery – all in all a good Easter Sunday and a bit of training for the camino next week.

Sleep

I want to sleep. To be in my dreams. To be with the ones I love. The ones that love me. No troubles. No reason to complain. All in tune. All in balance.

So that’s what I’ll do tonight. Ready to roll this big stone from the opening of the tomb to let in the light. For Pádraig to see.

The light guiding the dreamboaters, guiding us on the way, the way of life. An Saol.

10th Saturday Social Gathering – An Saol Café


We will be continuing with our Saturday meetings this Saturday

Share your experiences with others!
Gather strength and courage!
Flavour life, literally!

The An Saol Foundation’s 10th Saturday Social Gathering
of survivors of severe Acquired Brain Injury (sABI), their families and friends

An Saol Café

Everybody welcome!

Saturday, 15 April 2017
2pm – 5pm

Odin’s Wood HSE Day Care Centre
Kildonan Road
Finglas West
Dublin 11
Eircode: D11 H526

Enjoy an afternoon with great tea/coffee
Bring a cake, a game or an instrument
Bring yourself, friends and family
Please help us to spread the word!
www.ansaol.ie
Reinhard.Schaler@ansaol.ie
For enquiries: 087 – 6736414 (Reinhard)

Saeta

Pádraig and I went to join a ceremony at noon today following the stations of the cross. Whatever you think about or believe in relating the stations, it is one of the most powerful prayers and ceremonies I know. I had half forgotten about it, so it really hit me very deep down. – To me it’s an allegory for what life is in essence. Life, from the very start is deemed to end, no matter what you do or think or try to do. In between birth and death, there’s a lot of suffering, whether you admit to it or not, whether you have experienced it yet or not.There are also those dreamboaters along the way who do the most incredible things to encourage and help you.

But while I was joining the prayers I could not help but thinking about the poem by Antonio Machado, used as the lyrics for what I would consider to be one of the most significant and memorable songs ever, La Saeta:

¡Oh, la saeta, el cantar
al Cristo de los gitanos,
siempre con sangre en las manos,
siempre por desenclavar!
¡Cantar del pueblo andaluz,
que todas las primaveras
anda pidiendo escaleras
para subir a la cruz!
¡Cantar de la tierra mía,
que echa flores
al Jesús de la agonía,
y es la fe de mis mayores!
¡Oh, no eres tú mi cantar!
¡No puedo cantar, ni quiero
a ese Jesús del madero,
sino al que anduvo en el mar!

I can’t and I don’t want to sing to the Jesus on the cross, but to the one who walked on the sea.

If you have a few minutes, listen to the song by Joan Manuel Serrat, and remember the times in Spain, one year before Franco’s death. It’s from a cassette (!) I bought and played and played and played at the time Pat and I lived in Salamanca and met for the first time. There are days when I wonder have I move on at all from those days. And I think I have a bit in myself of the young people who don’t like their birthdays, because they don’t want to grow up?

RFK

Omg, rn, afk, my bf is lol bc he’s on imgur w this tl;dr posts and nty. Imo, lame af. Oh, brb, I gtg. Ttyl!

Ok. I did not write this. I found it in an informal competition on writing the longest sentence possible in text speak. There’s all sorts of things to say about using abbreviations which most mortals have to look up on lists to make sense of. I’ve heard of people who made up abbreviations to confuse the receiver of the message – or just to have some (very weird) fun.

RFK is not one of these abbreviation, it’s the initials of the brother of JFK (everybody recognises that acronym), former US attorney general and senator Robert F. Kennedy. He once said – and I couldn’t find out in which context: Don’t get mad get even. You probably know that RFK was assassinated, so you would be excused if you believed that maybe, just maybe that strategy of his didn’t work as well as it sounds and as he thought it would.

I still like it. Mostly because “getting mad” has a taste of helplessness, of not being in control of the situation, like avictim-type reaction. Whereas “getting even” has the feel of an eye-to-eye relationship, a much more controlled, rational approach that will just not allow certain things to pass.

The one, but very important, downside to all that kind of thinking is that you might spend your time trying to get even, when the person or institution that is getting all your attention and all your available time isn’t really worth it. It could all be quite a waste of time. Trying to get even. When you really have more important, positive and proactive things to do. – Probably worthwhile reflecting on this a little more…

Today, I booked the hotels for the 2nd leg of the Camino Celta in Spain: one night in A Coruña, four nights in Ordes, and two nights in a priests’ seminary (no less) in Santiago. Great to have that organised and to know that wheelchair accessible rooms will be ready for Pádraig when he gets there.

As a good, newly made friend recently put it: Onwards towards Santiago!

It means so much and puts the pitiful ignorance of neglect into its place.

Dreamboaters. Ahoy!

War

Just after 6am, I heard the bin men coming down our road emptying those big bins left in front of the houses on our street, one by one, into their huge truck.

It made me think.

What would we say, how would we react if one day, the bin men with their huge truck didn’t show up. For whatever reason: maybe one of them was sick, the other went on holidays, and a third had decided he could not do these early hours anymore for personal reasons.

What would we say if we went to the airport to catch a flight and were told the flight had, unfortunately, been cancelled because the pilot had not shown up that morning but texted in that he had had a bad night and couldn’t possibly come to work?

What would we say if busses did not run on Saturdays and Sundays because although drivers had been hired to cover the weekend shifts had given their notice that from now on they could only do weekday shifts?

What would we say if any of the essential services we so much depend on every day, such as public transport, police, ambulance, hospitals, gas and water emergency, were not available one day because some individual staff were not available – for whatever reason?

There’d be war on the streets.

Yet, any of the above has happened to Pádraig. The service provider and the service commissioner allow agreed shifts to remain uncovered.

It seems that what is right and what is wrong is often determined by the number of people who shout. You can be ignored, left behind, and abandoned – as long as you are the lonely voice in the desert no-one is going to hear or listen to you, never mind care about your needs.

Today, Cystic Fibrosis sufferers and their families celebrated because the Government and Simon Harris in particular had succeeded in agreeing a deal with drug manufacturer Vertex that will give them access to vital drugs, such as Orkambi and Kalydeco. The women (!) who had led the campaign that ultimately led to this deal were on today’s RTÉ Radio One Ray d’Arcy show. They went out of their way to thank Ray and other presenters, among them Joe Duffy and Claire Byrne, for their support which made this groundbreaking deal possible. – It seems that health policies are determined by media pressure and that nobody sees anything wrong with that. You have the media on your side, the sick will get what they need. You don’t have the media on your side, you can ‘safely’ be abandoned, your children can be made a ward of court, and necessary treatment can be denied.

I think there’s something fundamentally wrong with this line of thinking. Wouldn’t you agree?

(However, I hear you thinking – if that is what it takes???!!!)