Sightseeing with my sister. Breakfast at Kilkenny’s. Looking at shops ’round Henry Street. Conversations not had in a long time. Tired tonight.

Remembering last night in Fagan’s, packed with people coming out of Croke Park. Having fun I felt completely unconnected with. Having it all so clear in my mind. All of a sudden. The road to Damaskus in Fagan’s.

No more wasting time. Focusing on life. On what is important. Something everyone should do. Just with more urgency in a case like mine.

Looking at this as a normal life is a ‘tool’, maybe even a kind of figure of speech, to explain, including to myself, the only way to deal with what is a very not-at-all normal life situation. When there ain’t as many options left, there has to be an even clearer focus on options that make sense, that have meaning, a purpose, a heart, love, compassion and zen.

No more getting distracted by noise, by worrying about things I won’t ever be able to change, no more despair about people who lost their way, no more sorrow about injustice, lack of understanding, lack of respect, lack of…

There won’t be anymore ‘lack of’, only the ‘road’ we’ll travel on, only the river we’ll go down in Pádraig’s Dreamboat Into the Wild. Together. In Company.

More cakes, coffees, teas and biscuits, as well as a lot of good conversation and exchanges. An afternoon out. An afternoon shared with friends.

Today’s second An Saol social gathering was a bit quieter but really good for conversations and an exchanges of experiences amongst like-minded friends. Thank you to all who where there, brought cakes along, and shared their company with us!

We decided that for next Saturday and the coming weeks, we’ll make more use of the other rooms in the centre and organise an hour of activities, like games and music sessions for the injured family members, from 3-4, so that they get something even more special out of the afternoon.

If you know anyone with a sABI, please pass on the word about our meetings to them. I will not be able to be at the meetings every Saturday afternoon for the whole year, but we’ll go ahead with the weekly meetings as often as possible.

We know that our friends from Longford will only make it once a month, so that Saturday will be extra special!

Today is my birthday and my sister came over from Germany to celebrate with us. It was a good day.

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.

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)

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.

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.

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 @olivercallan do for the #Irish what @arjenlubach did for the #Dutch – just to get #Trump on our side? Please? It might solve our problems.

Check it out.

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.

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?

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.

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.

And we both really enjoyed it.

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

• ‘Successful’ attempt to read thoughts of ‘locked-in’ patients
• The Final Countdown: Ireland’s Ratification of the UN Convention on the Rights of Persons with Disabilities

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.

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!

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.

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