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.

 

Miracles

Pádraig didn’t get up, he did not throw his wheelchair into the Gave and walked away. The thing is, miracles ain’t happening like that. They are more subtle and they take their time. Sometimes, a miracle happens right in front of your eyes and because you’re so busy or distracted, it passes straight by without you noticing that it happened.

Pádraig is really happy here. He really enjoys the company of all the exceptional, beautiful people who are helping him to get dressed, to eat and drink, to attend the events, and to get back to bed at nighttime. People who tell him about their lives and who talk to him in Irish. It’s just the first day today and the only time that I have to be there with him is when he’s getting up in the morning and when he’s going to sleep in the evening. In between, what I am doing is not more than checking in with him and his crew.

After one day, that is an awful lot, both on behalf of the carers who have the confidence and Pádraig who has the trust.

In my mind, this is (another) slow-moving but highly significant miracle.

There are miracles happing all the time. We just have to open our eyes and our minds to notice them.

Back in Lourdes

Why would a flight from Rome to Lourdes cost €101 and a flight from Lourdes to Rome just €100? Why don’t have planes a section for wheelchair users, along the lines of this airline where a wheelchair can be brought in right beside the front seat, actually into the row itself. because the front row design is so generous.

We have arrived in Lourdes after a long, long journey. Tired but looking forward to tomorrow. Pádraig is really enjoying the trip so far. Though we all miss Louise.

PS: I think the reason for the price difference between the flight back to Rome is that by quoting €100 for both flight it might have looked as if the €100 were the return price. What do you think?

Subtle

The An Saol Project is making progress. Looks like we finally found premises that are half-way affordable. Next steps are planning permission (change of use), fire and disabled access certifications. We will need to make some modifications to the building but will keep those to a minimum.

We really do need to get the premises up and running as soon as possible. It is a great pity that the old tabacco factory we had planned to refurbish won’t work out: the amount of refurbishment work that needed to be done would just have taken too long and would have been to expensive. Hopefully, we’ll be luckier with this new, more modern building.

I received an invitation to join a good friend to give a talk at RehaCare, Europe’s largest rehabilitation services and equipment exhibition taking place every year in October in Düsseldorf. It’ll be a matter of leaving early and returning late, on the same day. Not really looking forward to the long day, but to the visit and the fair.

Thursday is one of Pádraig’s physio days and as almost always, he manages to do something he hadn’t done before. Nothing major. Rather subtle. Which makes it almost  more spectacular. Today, he was lying with his tummy on a matt on the ground, propping himself up on his elbows while one of us was supporting his head. With his feet rectangular to his legs and his toes tug into the ground he lifted up his knees and straightened his legs. Try it. It’s difficult. Try it a few times:)

In the afternoon he often goes for a spin on the MOTOmed stationary bicycle. For some time now he has been cycling by himself, without the support of the built-in motor. But, today,when he was finished, for the first time he managed to get his feet and legs off the pedal all by himself.

Tonight, Pádraig went to see Irish comedian Dara O Briain. A really good friend had given him two tickets for his birthday before the summer – and there was quite a bit of competition for the second ticket. His cousin on visit from down under won. Pádraig really really enjoyed the gig!

In the Firing Line

Mens sana in corpora sano. The Romans knew that physical exercise is an essential part of mental and psychological well-being.

Today, Fiona Bull of the World Health Organisation (WHO) presented on RTÉ‘s “Morning Ireland” an evidenced-based study just published in The Lancet Global Health Journal that confirmed what the Romans had discovered 2,000 years ago and put into five memorable words.

Here is how the modern scientists put it, having conducted a world-wide study of exercise levels: “Insufficient physical activity is a leading risk factor for non-communicable diseases, and has a negative effect on mental health and quality of life.”

Apparently, more than 1.4 billion adults are putting themselves at heightened risk of deadly diseases by not getting enough exercise, according to the WHO. The study found that a third of women and a quarter of men worldwide are in the firing line for killer conditions such as heart disease, diabetes and cancer unless they up their physical activity.

What can we do about this?

The WHO recommends each adult do at least 150 minutes “moderate-intensity” exercise – such as brisk walking, swimming or gentle cycling – each week, or 75 minutes “vigorous-intensity” activity – such as running or team sports.

Why do I think this is important?

Well – if the lack of physical exercise has such devastating effects on a person, and if this has now been proven by a large, world-wide study published by The Lancet and endorsed by the WHO, and if physical exercise is denied to a person with a disability, such as a very severe acquired brain injury, who cannot exercise without help – then, in my mind, the denial of that exercise amounts to knowingly put this person in the “firing line for killer conditions”. What if a person died in this “firing line for killer conditions” ?

According to information on the website of the Law Reform Commission, the following is the current law on murder and involuntary manslaughter: “Murder occurs if a person intended to kill, or cause serious injury to, another person who dies as a result. Murder convictions can include situations where a killing was planned in advance; where the victim was knowingly shot; and where the accused is aware that the natural consequences of their actions would lead to death.” And: “Gross negligence manslaughter (is) where the death arises from a negligent act or omission by the accused involving a high risk of substantial personal injury.”

Pádraig had a good day today. Tons of conversations and interesting banter. When I didn’t hear the door bell, he turned his head towards the door to get my attention and to let me know that someone had called. Pretty amazing stuff.

Tomorrow, we’ll be getting ready to travel to Lourdes where we’ll be from Friday to Wednesday of next week, together with other pilgrims filling two large planes. Because of the railway strike in France the summer, we didn’t make it to Lourdes on the German pilgrim train. So we are really looking forward to go to Lourdes with Pádraig for a few days of.great company and spirituality, to get out of the firing line, and to re-charge the batteries for the months to come! And we are so grateful to the brilliant people who are making this trip possible.

WalkInWater

Did they notice what was happening? On the way towards the lift that would help Pádraig to get out of the water, an elderly lady said that she so much hoped that Pádraig one day would swim as he did before and that she was praying for him. I was wondering, had she noticed today that her prayers were being heard and answered?

When Pádraig stood at the edge of the pool in the water, holding on to the side bar, with me just supporting his head, I had an idea: what if the carer who is coming with us swimming would stand in front of Pádraig, what if he was holding both of Pádraig’s hands to help him with his balance, what if I just supported his head from behind, and what if he then tried to walk across the pool, one step at a time moving his feet forward one after the other, shifting his weight from one side to the other, what if he reached the other side (almost) completely by himself.

Not only did he make it to the other side, he made it back as well.

It was spectacular.

And I was wondering whether anybody in the pool, apart from us, realised what they were witnessing.

Probably not. For them, it was a normal Tuesday afternoon in the pool.

History

There is a widely held belief that the withdrawal of live-saving measures, and what withdrawal of food administered via a PEG for someone who is going to die of an injury or illness and does not have any prospect of recovery. (Here is a paper in German discussing the topic.) Like in the case of someone in a permanent vegetative state.

In the UK, changes introduced in legislation recently mean that “judges will no longer need to be consulted when doctors and relatives of patients in a vegetative or minimally conscious state agree life-support treatment should end”.

I can only speak for myself – when Pádraig’s accident happened I was so dependent on the advice from doctors that I would almost have followed whatever they recommended. Had I done this, Pádraig would not be with us today.

A German judge once explained to me that a thorough, independent hearing guided by independent experts was necessary in all cases where the life of a patients was involved. This, she said, has to do with our history.

Secret Garden

“If you look the right way, the whole world is a garden”, Mary concludes in the “Secret Garden“. It’s “the one place where miracles grow”.

Although the door to the secret garden was locked today and guarded by a fierce hound, the garden we were privileged to spend a few hours in today was full of beauty and magic.

There were people there who had gone to school with Pádraig, there were many old friends, and there were people Pádraig and us had never met before.

They had all been invited by Marie and here family who had worked for months to make this day truly special.

Many people had made cakes and sandwiches, many had brought in gifts for the great raffle. All to raise funds for “Caring for Pádraig”, a fund set up and managed independently from our family to support Pádraig’s rehabilitation,

It’s worth remembering that Pádraig does not receive any rehab therapy at all from the HSE. Without the incredible efforts of Marie and her family, without them organising an annual fundraiser, Pádraig would not have made the progress he has been making.

So on behalf of Pádraig and my family, I would like to thank Marie and her family and all of Pádraig’s friends (old and new) who spent time preparing today’s wonderful coffee morning and who donated so generously to the “Caring for Pádraig” fund. Rest assured that every cent will be spent directly to support Pádraig’s rehabilitation programme which could not be delivered to him was it not for your generosity.

Today, the doors to the secret garden were wide open and everybody was able to discover “the one place where miracles grow”.

Thanks you to Marie ad here family and thank you to all