Somewhere

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.

Dolores Breslin

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.

Spoon

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

Tapping

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.

UPandDown

You’re better off not knowing what you’re letting yourself into, at times. Because if you did, you’d probably be afraid to keep going.

And, at times, you do something you never expected to be capable of – just because you never tried doing it before.

Pádraig never tried to lie on his back, pull his feet up to his bum, press the feet down into the ground and lift up his bum.

Today he did it. UP and DOWN.

 

Not just once, but five times in a row. A first and what a great achievement!

I have started to prepare my presentation for the RehaCare Fair in Germany. 20 minutes of fame, together with Daniela who invited me to join her. It’ll be about charting a course into a new life. One course charted for Pádraig by the system. Another course charted by himself. With two different outcomes. And two different lives. And one conclusion: there is no justification, absolutely none, for the current practice that “maintains” persons with severe acquired brain injury in nursing homes to continue.

Unforgettable

You must have experienced this disconnect: you want to share an experience and your family and friends either don’t get it or don’t seem to be interested.

Nobody in my family ever managed to even remotely understand what the music of Udo Lindenberg, Bob Dylan, Joni Mitchell, or James Taylor means to me. My heart fills with buckets of emotions and memories, and they don’t even listen to me. When I came back from my year in Salamanca, none of my friends were even remotely interested in listening to me telling them about my long-night, enlightening, deep, disturbing, analytic and romantic conversations I had with my fellow-students in the candle-lit bars and never-ending nights.

There virtually aren’t, with very very few mostly accidental exceptions, people I can share my feelings and experience with in relation to Pádraig’s accident and the radical change that it lead to in my life. The experience of this (un)real loss that is present every day and every night. Is mine.

I don’t like charity that creates dependencies. I don’t like pity that makes those who express it make feel good. I struggle with the loneliness of the human condition. I romanticise the lone, strong, independent, nothing-left-to-loose character.

At the same time I want to go back to that window on New Year’s Eve many decades ago listening to Joni Mitchell’s River. Lying on the floor beside the bed of the person I hardly know listening to James Taylor’s Carolina in My Mind. Sitting on the train to Dortmund singing Udo Lindeberg’s Alles klar auf der Andrea Doria with my friends. And there is Udo’s “Reeperbahn” and I’m back, in my mind, to those two years we spent in Hamburg and the rare evenings with a good friend in “Harry’s Bar” or going up with Udo in the lift of the “Atlantic” on Christmas Day evening.

One of the connects, the experience and memory I share with family and many good friends are Thursdays with Pádraig – when his friends come and share a couple of hours with him, chat, exchange stories, make fun, laugh and bring some level of normality into Pádraig’s life and our house. Like tonight, when three friends arrived with biscuits and crisps and love and laughter.

Unforgettable.

Door

This was Pádraig’s door this morning at just after 5am in Lourdes. Someone had tried to make the doors look really welcoming over the past few days.

Pádraig did have an excellent team there to help him enjoy the stay and to get a feeling of independence from the ‘usual suspects’. There was an incredible level of trust on all sides and a heartfelt determination to make this work for all involved. No blind trust. But earned. From the people who prepared the food, helped him to eat, assisted him to get washed, even to have a shower, to get dressed, to turn in the bed during the night, to participate in processions and masses.

Someone said this was a parallel reality we left behind there this morning. What we should take along with us is a portion of the “looking after each other”, with a smile or even a laughter on our faces and lips.

Someone else said that when we feel bad or sad, we should look for someone who is worse off then we are, and then – do something for them! And we ourselves will feel better – believe it ot or not!

Baths

The request by Mary was for people to drink and bathe in the water emerging from the well in the grotto. And that’s what people have been doing for the past 160 years. No idea hy did she ask people to do this.

Today, Pádraig was lifted by a very organised, determined and assertive crew of half a dozen Italians on a waterproof stretcher into the freezing cold water. Like everything else, the 100+ year old baths are a tad to short for Pádraig. But somehow they managed to get his whole body into the water for which you famously don’t need a towel to dry yourself. Once Pádraig was finished, I went in myself. I won’t forget the shock of the cold cold water. There is no doubt that bathing in and drinking the water of the well at the grotto did have an effect on me. For a moment, it completely cleared my mind. And it’s all quite out of the ordinary.

I have, unsuccessfully, been trying to find out how it is that water became so important to Lourdes and why Mary asked people to bathe in it and to drink it.

What I do know is that there are few things that are more important to Pádraig than water. From drinking to swimming and now also bathing. Water is so incredibly powerful.

I haven’t really had an opportunity to talk to Pádraig about his experience in Lourdes. The place is too busy to do this. But I will. Maybe together we can sort out our impressions of a very special place with incredible people surrounded by neo-signs and blinking crosses and madonnas.

Tomorrow morning, we will have to get up just before 5am to get ready and catch the first flight back home. With a bottle of water from Lourdes in our luggage.

Crack

When you build something, do it right. Solid, lasting.

Buildings as well as organisations or relationships.

Right?

Wrong!

Solid buildings remind me of bunkers. Dark spaces.

The Pope, or someone on behalf of the Pope, chose Leonard’s  Anthem” for his arrival in Dublin’s Croke Park.

There’s a crack in everything that’s how the light gets in“, wrote Leonard.

Today, during mass, a priest referred to this and said that we, the Church, were the light.

Wrong again.

There is enough light. But there ain’t enough cracks.

To open up the bunkers.

Tomorrow is our last day, we’ll be leaving Lourdes very early on Wednesday morning. I am sure Pádraig will be missing Lourdes, the friendship and company.

It’s off to the baths tomorrow morning!

TimeTravel

Do you like time travel? But don’t know how to do it?

Here are just some possibilities.

Go to Lourdes. There are some new buildings (not that many), but the place as a whole has not changed in decades. The love, the processions, the songs, even the tacky shops. And there’s people here who have been coming for decades. It’s quite incredible.

Use your nose, smell. Once, when I was going through old papers, I opened one of the envelopes with newspaper cuttings my father used to send me regularly so I could keep up with the news at home (pre-internet times:) and there was just a whiff, but strong enough to catch it, of cigar smoke. And as the smoke was emerging from that envelope my father was appearing in front of me – well, not quite, but you know what I mean. He was never without a cigar, much to the annoyance of my mother who was worried about the white curtains turning yellow from the smoke (he had switched to cigars during the war when he found it easy to swap his allocation of relatively few cigarettes to relatively many cigars). And no: nobody was ever worried about our lungs back then, it was the curtains who were under attack from the yellow smoke.

Listen to music. – Last Friday, just about as we were heading off to the airport for Lourdes, the postman rang and delivered a package for Pádraig, one that had been announced to him by a really good friend in America who in her generosity had decided to share her playlist with Pádraig – and to send it to him in a really impressive iPad wrapped in a beautiful calendar towel with the birds of America (and a super-dooper security case) with his name edged into the iPad.

The first song that came up when we started the iPad and the playlist was Luba’s 1987 song The Best is yet to Come. It’s a real eighties song and comes with a real eighties video. Pure brilliance.

I might be down
But don’t count me out
There’s a world
I want to know all about

You can say I’m just dreaming
I’ve always been an optimistic one
I can’t help feeling
That the best is yet to come
Oh, oh, oh, oh

There comes a time
Ain’t nothing you can do to stop it
Right now is mine
I’m gonna make the best time of it
Don’t hold your breath
If you’re waiting for me
Today is just tomorrows history

I like two lines a lot: “Don’t count me out” and “You can say I’m just dreaming“….

Time travelling into the future, I know that I’ll be listening to this song the day we’ll open the An Saol Project Day Centre.

Pádraig had another great day in Lourdes. The fabulous youth mass in the morning.

A picnic in the afternoon. And the candle light procession in the evening. And against the odds, the weather kept up for all of these events.