On my commutes to Limerick I had time enough to read the entire newspaper. Back to front. I was really well informed about the background, not just the headline news, of Irish society, politics and finance. Did it make a difference to anybody? Can’t think of one. It was completely and utterly inconsequential.

That’s what happens maybe not always but very often. There is a disconnect between knowing something and acting on it.

For many different reasons.

Today, I went to the University of Maynooth with a new friend and we walked through the Pontifical University St Patrick’s College which opened its doors in 1795 as the National Seminary. My friend told me that, at the time, it was the world’s largest seminary. Interestingly, it had been built by the English Crown at a time, when Irish priest were educated in Belgium, Spain, and, most importantly, pre-revolutionary France. So they weighted it up: would it be more costly to deal with hundreds of priests educated in revolutionary France or to build them a seminary in Ireland? The choice was clear.

Walking through the old seminary with dozens of portraits of the former leaders of the seminary, hanging from the walls, slightly leaning over those passing by underneath them, was almost surreal. There was, of course, not a woman to be seen in any of these portraits. And the men seemed self-absorbed in their power and might, looking down on their flock.

Their times were different times.

Consultants and health professionals don’t have their portraits hanging on the walls of hospitals or care facilities. But many of them still look down on their patients. Despite all the talk about patient-centred care, the talk hasn’t quite caught up with reality and practice.

Systems resist change. For people, change is, more often than not, threatening.

Change will not happen by itself. It’s up to us. We have to take responsibility.

Pádraig had a great physio session today. He is working on his personal bests, his PBs, to make them not the exception, but the norm. He did more than 20 lift-your-hip exercises while laying on his back. Which was pretty cool. He is also getting much better control over his shoulder movements.

I still have to figure out how to spend more time with Pádraig, looking at the world. Exchanging views about what’s going on. Should those pictures from the past be taken down to make more room for a more equal way to deal with each other?

Spent some time giving more details to Pádraig on what’s happening, especially with his good old friend in the hospice. There was an all embracing sadness. And now doubt that Pádraig understood the gravity of it all.

Back to Saturday morning baking. Back in Odin’s Wood An Saol Café. Back to meeting families and friends affected by sABI.

Today we started the An Saol Foundation’s Policy and Peer Support Group (PPSG). We looked at a charter. We discussed some topics we will address over the coming weeks and months. We considered how often we’ll be meeting. All that information will be made available soon to make it easier for all to join, to provide us with energy, ideas and direction.

In the afternoon we stopped by Pádraig’s and now also our good friend who recently moved into a hospice. There was a camera crew there interviewing him about his times and life. Pádraig and his friend created an atmosphere in front of the camera that was very special. It all happened in Irish which left me a little on the outside though I got the drift. I got the drift man.

Pádraig and us this afternoon visited an old friend of his who is dying. “Everybody knows that’s how it goes.” Which doesn’t make things one iota easier. And I wonder why.

Why are we hanging on to life? Why is life so important to us?

The only answer I can think of is that we live for others.

No matter for how long.

Don’t forget: if you are free tomorrow from 2 – 5 pm, or anytime between 2 and 5 pm, then please join us at the An Saol Café in the HSE Day Centre, Odin’s, Wood, Finglas, Dublin.

The leading causes of death were said to be “drink, drowning, and drowning while drunk” – no, not in Ireland. In New Zealand. Amongst men. 125 years ago. And this was one of the reasons why, so says the New York Times, New Zealand became the first country in the world to give women the right to vote. 125 years ago this week.

Not all were convinced though.

Apparently, one of the country’s largest newspapers, The Press, said “We believe that a very large number of women do not desire to vote. They shrink from having to go to the polling booths on election days. They would much prefer staying at home and attending to their household duties.”

Well, even if they still believe this today, which I don’t think they do, they would not admit to it.

One day soon, nobody, even if they still believe this, which I don’t hope they will, nobody will say in public, or worse, to the parents, or even worser, in the presence of the conscious victim, that it might have been better if he had died in the accident and that spending any money in his rehabilitation would be a waste of precious and very limited resources in the health system. As did a nurse. As did a consultant. Say to us.

Today, Pádraig, as a first, lying on his back, pushed up his hips really high up towards the ceiling, lifting them up completely off the ground. In the afternoon, we did a pretty complicated quiz out of a brain rehab exercise book with him, one he would clearly not have been able to do earlier in the year, and he managed it with flying colours.

Of course, women should have the right to vote.

Of course, one day, survivors of severe acquired brain injury will have the right to rehabilitation.

The incredible thing is that it is up to us to prove this to the health system. As if they did not know already.

Prisoners convicted to life in prison have the right for their case to be reviewed regularly before an appeals board. Because this is their human right. And rightly so.

The same right, i.e. for his case to be reviewed regularly, is not afforded to Pádraig and others in his situation.

That human right still has to be asserted.

PS: Don’t forget: An Saol Café this coming Saturday, 2-5pm, Odin’s Wood HSE Day Centre, Kildonan Road, Finglas West, Dublin 11. Meeting, chat, coffee, cake, discussion about setting up the An Saol Support Group, planning for the rest of the year. All welcome.

 

We will be resuming our Saturday afternoon An Saol Café in the HSE Day Centre, Odin’s Wood, from 2pm to 5pm, starting this Saturday. All friends and families affected by a severe acquired brain injury are welcome.

With these meetings we hope to start a support group, which will inform the work of the An Sail Foundation and its pilot project.

The first meeting of this year, this coming Saturday, will give an opportunity to meet, to sit down and chat, in a relaxed atmosphere, with some tea or coffee and cakes (which everybody is welcome to contribute), and to plan activities for the remainder of the year.

Please do not worry if you can’t make it this Saturday, there will be more opportunities to meet in the weeks to come.

Feel free to pass on the information about this meeting to anybody you think might be interested to attend. All are welcome.

It will be closed. Nobody knows for how long. Could be six months, could be nine, could be a year. Who knows. We won’t see our friends and we won’t enjoy this incredibly uninhibited dry humour of the lads in the changing room on Tuesdays. Because they will build new changing rooms. And today was the last swim in this pool for a while.

Pádraig did great. He walked across the width of the pool a few times, with some, but not that much help. And – this was a first – he turned onto his chest, stretching out his legs, turning his head to the side, enjoying a whole new experience in the water.

We’ll just have to find a new pool. Somewhere.

We received some very sad news today. Dolores Breslin died yesterday, 16 September 2018. May she rest in peace and may her family find the strength to bring them through this very difficult time.

I met Dolores and her daughters for the first time at one of the regular Saturday afternoon meetings the An Saol Foundation held last year in Odin’s Wood Day Care Centre. From the moment we met, it was heart-warming and extremely moving to see how much her daughters cared for Dolores in a very difficult situation, new and unknown to all of them. Dolores was never left alone and always looked after by her family who made a super-human effort to ensure she got the best of care and the best treatment they could possibly provide for her.

Dolores is the third person who died in our circle of families affected by a severe acquired brain injury. Sara Walsh died on 17 June 2015. Amanda Denton died on 25 August 2018. May they all rest in peace.

All is not well. Beneath all those stories of happiness and positiveness and don’t-look-back-in-anger and we-can-work-it-out optimism, I am living with a constant feeling of awe about this crazy world and its crazy people, a feeling of deep sadness, vulnerability, desolation and melancholy. The free-wheelin’ Reinhard (if he ever existed) has left the building.

This morning, looking at the spoon that is holding (most of the time) Pádraig’s headrest in place, I was thinking: what will I do about the spoon? Months ago, I told the HSE about the broken screw and thread. I contacted the supplier several times, twice in the last few weeks, and did not even get a reply.

• Should I send another text/email or make another phone call?
• Should I contact the manufacturer myself, get the part, fix the chair and send the invoice to the HSE?
• Should I ring Joe Duffy?
• Should I pack my bags and Pádraig’s and leave?
• Should I give up altogether?

(By the way, normally I could myself give a ‘considered’ answer to the questions above. But today, I don’t feel like being considerate. Not at all. I feel like drawing lines.)

There is no doubt that persons with very severe acquired brain injuries suffer tremendously and eventually die because they do not receive the treatment science and research tells us they require. It is known that their families’ mental and physical health suffers tremendously because of the injury and subsequent insults and neglect.

Yesterday, at a public conference, a leading rehab consultant told us they now call their ‘pilot’ projects’ ‘demonstrators’ because pilot projects generally don’t deliver – they said. I felt a shot right into my heart and into the An Saol “Pilot” Project. The consultant knew I was in the audience.

Here am I without a job, stuck, trying to manage very difficult situations, trying to stay calm, collected and positive (because that is what you do), listening to people telling me how well I manage. But today I don’t. Today I am getting another lesson in being humble. Because rage, as a very good friend told me recently, either gets you into jail or an asylum.

Is being humble (yet determined) the answer? When the reality is often full of deep sadness and outrage and desperation and helplessness? How can the world keep spinning and the sun keep rising every morning. Knowing that all is not well?

Oh, Mama, can this really be the end
To be stuck inside of Mobile
With the Memphis blues again

A cousin from Downunder was sharing their music today with Pádraig when I noticed tapping on my food. So here are just a couple of seconds of tapping that Pádraig continued for the whole song. He must have liked it!

 

I went to a conference this morning organised by the Irish Medical Organisation (IMO) on “Getting Healthcare in Ireland”. One of the opening presentations was given by Deputy Roisin Shortall, Chair of the Oireachtas Select Committee on the Future of Healthcare that recently presented the all-party ten-year healthcare plan, SlainteCare, which was adopted by the Irish Parliament, the Dail, without a vote. Roisin is a great politician with huge integrity and a long-standing excellent record in health politics. – When she had finished her presentation and had answered her questions she stopped by as she was leaving the event to ask how the An Saol pilot project was progressing!

In the original programme one speaker had been announced, Dr Raymond Carson, to talk about “Access to Rehabilitation”, on the day he was joined by Dr Jacinta McElligott, Rehab Consultant in the NRH and the HSE’s Clinical Rehab Lead. Raymond highlighted the fact that rehabilitation was completely under-resourced in Ireland although access to rehabilitation is, in his words, a fundamental human right. Jacinta spoke about the various plans and reports in place around rehabilitation. – Sadly, both presentations failed to deliver what they had promised in their titles: how to access rehabilitation services in Ireland.

At the free lunch (!) I had a long chat with an old friend I had not seen over the summer, and with a young doctor who had just recently arrived in Ireland and how had worked previously in other European countries, among them Germany.

Overall, the doctors mainly focussed on their own needs, rather than those of their patients.