TG4

It’s far too late and the day was far too long.

But.

It was soooo exciting.

Over the past three days, a TV crew on behalf of TG4, the national Irish language television channel, was in Dublin to interview the NAI, NRH, friends, family, Pádraig and, above all, Pat. We don’t know when it’ll be shown, but there are indications it’ll be in the autumn.

It’ll be another great milestone in creating visibility for the most invisible neglect, for those, for whom waiting lists don’t exist because there are no services for them for which they could be waitlisted.

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We will be continuing with our Saturday meetings this coming Saturday
Share your experiences with others!
Gather strength and courage!
Flavour life, literally!

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

Saturday, 11 February 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!
http://www.ansaol.ie
Reinhard.Schaler@ansaol.ie
For enquiries: 087 – 6736414 (Reinhard)

LivingOnTheList

Living on the List, a programme by public Irish TV channel RTÉ One, broadcast last Monday, must have been one of the most horrific programmes ever shown about a health system that has failed and is, instead of providing help, inflicting terrible damage. According to RTÉ,

Over half a million people are currently on hospital waiting lists in Ireland and it’s a figure that’s been rising every month for the past year. These people, adults and children alike, face the painful reality of waiting months, sometimes years for treatment for a range of conditions from cataracts and scoliosis to spinal and gynaecological conditions.

Well picture this.

There are no waiting lists for the treatment of survivors of severe acquired brain injury (sABI), because not only do services not exist, there isn’t even an understanding within the professions that these services are so desperately needed.

Were we able to say there is a waiting list for services for sABI survivors would actually be progress because it would mean that these services were available, and generally acknowledged to be required.

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Let’s put survivors of severe acquired brain injury first. Not categorically, forever, but just for a while. Because this is the only way we will be able to put the in place. Let’s change the hearts and minds of those responsible. Work with those who share our horror and make change happen.

What a busy day it has been for Pádraig. Getting up with the help of his PAs. Exercises. Breakfast. Physio session. Relaxing massage hour. Lunch. Mid-day nap. Music therapy. Tea & biscuits. Dinner. Exercises. Ready to go to bed. Sleep.

He had a busy day because he wants to be busy and we made sure he was. Let’s make sure everybody gets busy, finds a purpose in life, is integrated, and supported to live their life to the fullest.

If you’re in the mood for some fun – the attempts started by the Dutch trying to convince Trump to put their country, The Netherlands, second (having put America first, of course) has become not just a European, but a world-wide movement. There Germans, the Austrians, even the Moldovians have put forward their bids to convince Trump to put their country second. There is a website, http://www.everysecondcounts.eu, channelling all those bids to the US President to make it easy for him to access the bids, review them, and take his decision. It’s fantastic. Really. It’s great. It’s great. There’s no bid by Mexico. No. No bid by Mexico. Because we all know that they’re losers. Total losers. But the site, it’s fantastic. Really. Fantastic.

Fantastic

Right. There are so many people asking about the progress we made with the An Saol Project proposal and the HSE, so many weeks have passed without any progress being made, so many attempts have been made just to set up a meeting – that today we have decided to give it to the end of the week, but not more. It’s reasonable to say that if the An Saol project is not high enough on the priorities of the HSE, we need to make sure that it’ll get there. That’s what we’ll start to do from next week.

In the meantime, here is a bit of fun.

Here is my question:

Could do for the what did for the – just to get on our side? Please? It might solve our problems.

Check it out.

Campaign

Miriam O’Callahan interviewed Jonathan Irwin in her programme yesterday. Jonathan founded the Jack and Jill Foundation in 1997 with his wife Mary O’Brien to provide home health care to severely sick children, following a personal tragedy in his family.

jonathan-irwin

As I was listening to him talking to Miriam, I thought I was hearing echoes in my head so similar was what his family had gone through to what is happening to our family and so many others who have loved ones with severe acquired brain injury: the lack of real interest by the HSE; the negative attitude by the health professionals; the lack of funding being made available to relieve some of the pain; the warning given to them when they said they would take their severely sick child home that they would be under such pressure that it would break their marriage; their decision to do something positive themselves rather than ‘just’ giving out about the ‘system’.

The Jack and Jill Foundation is almost entirely financed through fundraising; they receive negligible amounts from the HSE.

Pádraig today agreed to get his picture taken tomorrow for a report on the lack of neuro rehab in one of Ireland’s national papers.

Isn’t that crazy?

In addition to your daily struggle to recover from a very, very serious injury with very little to no support from the ‘system’ you have to get your picture taken for the papers to campaign for change.

How many pictures have to be taken? Are they, like the answer, my friend, blowing in the wind? Or is anybody listening? Preferably someone who can help us to affect change?

Cartoon

There are moments in time when it is easy to be a comedian, to impersonate politicians for pure fun, and to draw cartoons. Over the past few weeks, there were many of those moments. Nonetheless, I think this cartoon that came to me via Twitter is just brilliant.

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It captures in just three words, showing just three people how democracy works. How the divisions of power, the in-build safe-guards, and a tradition of hundreds of years make sure that a single corporation cannot take over a democratic state. It’s what I learned in school over many years, all in one picture.

One day, someone will draw a cartoon like this showing how we, the people, decided to look after the most vulnerable members in our midst, despite the established health system and its representatives telling us this could not be justified because there was no return on investment, because these were hopeless cases.

We went for a long walk out to Dollymount and out to the Sea. It was a magnificent evening.

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And we both really enjoyed it.

Finally, here are a few links from the past weeks I found interesting:

And finally, finally another German song: Annen May Kantereit, Barfuß Am Klavier – which must have been really successful, judging by the number of views – but was completely new to me… not bad, though.

Odin’s Wood

We had one of the best afternoons at the HSE Day Care Centre in  Odin’s Wood today.

It was all of us together doing the right thing.

Next stop: the An Saol Day Care Centre.

Dreamboaters ahoy!

It was a fabulous afternoon. Thank you to the survivors of sABI, their families and friends, to those who allowed us to use the centre, brought cakes, played really fantastic music, and joined us, especially our friends from Longford, to have a great afternoon out! You are all real stars! You made us all really happy!

Everybody knows

I have been wondering much about repeating myself. I’ve been wondering about the purpose of writing this blog when I’ve said what is to be said, when people in large organisations are using it to exercise control and wield their power.

There isn’t much more to say then I’ve said about this journey from the acute hospital to early neuro rehabilitation and onwards to residential and home care. Maybe it’s time to distill this journey into the essence of it all and write that book.

everybody-knows

One thing I haven’t written about is how a little part inside of me dies each time I hear another, new shocking detail about the infuriating lack of care; or the inexplicable underuse of publicly funded equipment; or the lack of response to cries for help; or the nonchalant transfer to a nursing home of a perfectly alive young person; or the lack of education, training, and experience amongst the people in charge of caring and treating our loved ones; or blatant threats to families by health professionals; or the incredible lack of urgency to address life and death issues; or the disenfranchisement and incapacitation of survivors and their families.

But by writing about it, by repeating stuff everybody who wants to know knows already – will anything change?

Everybody knows that the dice are loaded
Everybody rolls with their fingers crossed
Everybody knows the war is over
Everybody knows the good guys lost
Everybody knows the fight was fixed
The poor stay poor, the rich get rich
That’s how it goes
Everybody knows

 

 

Invitation

Enjoy an afternoon with great tea/coffee,
even better home-made cakes,
and the best of Irish Music
Share your experiences with others!
Gather strength and courage!
Flavour life, literally!

The An Saol Foundation’s First Social Gathering

of survivors of severe Acquired Brain Injury (sABI), 

their families and friends

Everybody welcome

Saturday, 04 February 2017
2pm – 5pm

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

Please help us to spread the word!
http://www.AnSaol.ie
Reinhard.Schaler@ansaol.ie
For enquiries: 087 – 6736414 (Reinhard)

Moments

Have you ever sat on a bus, looking of the window, and all of a sudden, the world revealed itself to you, everything made perfect sense — and then it all vanished as quickly as it came to you, you are desperately trying to remember what it was, but it’s gone.

moments

One of Pádraig’s friends was telling us about a day when Pádraig had one of those moments (on the bus:) and as we were talking, we were wondering if these are the moments of happiness you remember. (We were also wondering whether Pádraig had made the whole story up just to have a bit of fun.)

Does happiness come to you when you least expect it? Can it come to you when you are ‘down and out’? Does it come in short flashes, in moments?

Just found a new German song (new for me) by Sebastian Hackel, Warum sie lacht. Not bad if you can ignore his hair do:)

Und das Leben ist schön,
die Zukunft ist dran,
die Sonne scheint,
ich weiß, dass ich lachen kann,
ich geh an, was ich angehen kann.

Und ich mach Seifenblasen,
Welten spiegeln sich,
und zerplatzen aus dem Nichts.

Today is the first day of spring in Ireland, lá Fhéile Bride. The end of winter. The beginning of new life.