An important day to remember the past and an important day to look into the future.

Five years ago today, my mother in law died. She had had what you would call a ‘fulfilled live’. But with her died a whole era. I got the call just a few seconds before the train pulled out of Heuston Station for Limerick. We rang Pádraig who was on a ski holiday with a group of friends from TCD. We woke him up and he was whispering not to wake up the others in his room. He made his way down from that mountain with the help of Google maps back to Geneva from where he made it home for the funeral. We thought those were difficult days.

In a bit more than three weeks from now, An Saol will have the first of regular Saturday Social Afternoons in the HSE’s Odin’s Wood Daycare Centre – all going well. We set the date for 04 February, probably from 2-5pm. We’ll have to sort a few minor details and then plan for an absolute brilliant afternoon for families and injured. It’s not really that much, a small enough start, but a real start, a real get together with a bit of coffee, tea, biscuits and, hopefully, a bit of entertainment. – We’ll need some support to organise this, so please let me know if you’d be interested and have time to help with the organisation:) I think that 04 February will be a day to remember in years to come as a day when we started to think that days will become easier.

Slowly but surely.

They were born to be wild. Brent Geese are the connection between Ireland and arctic Canada – if you were ever looking for such a connection. I wasn’t looking for a connection but a reason why there were hundreds of wild geese on this green in Kilbarrack in Dublin the other day when we went there with Pádraig to look at a wheelchair accessible car.

Turns out they arrive here in September, stay for the winter months and then go back to Canada in the spring time to breed. Almost 50,000 of them apparently. Many of them stay in Dollymount, on Bull Island, but some spend some time feeding on various greens during the day apparently.

We established that Pádraig’s wheelchair and himself fit into a Kia Sedona which is the only car I’ve found that wasn’t built as a van and then converted into a ‘person-car’. It’s nice, it’s comfortable, quiet, with a great suspension. Downside is: they don’t build them anymore. So I’ve started to look around to find out whether there are any good second hand deals in Ireland or the U.K.

What we want to do is, I guess, travel – a bit like the wild geese. Not being confined to one place. Being able to see other shores. Go places. Not being stuck in a room. The car Pádraig was given to by our very dear and generous friends has been a life-changer. I could just not imagine how different the past two years would have been without that car. But unfortunately, it’s a bit small for him and it is very shaky, especially given the large wheelchair he’s in and his lack of body control.

We’re Born to be Wild – and that’s how we’re going to live our lives!

I could never answer the dentist when he asked me whether I wanted an injection against the pain I was going to suffer momentarily when he’d started drilling into my jaw. How did I know? Was it going to be really bad? Was it going to go on for a long time? What is a ‘long time’?

I’ve been asking myself recently how much pain a person can take? Before you brake down? Whether there is ‘pain’ that is worse than ‘ordinary’ pain – if there is such as thing?

There is pain I experienced over the past 3-4 years I didn’t know existed. I’ve seen Padraig suffer pain I didn’t know anyone could survive. I’ve heard people inflicting pain on others, with their words, that nearly broke them into pieces.

Pádraig is fighting the pain and overcoming it. To breathe. To eat. To drink. To move.

To see him improving every day, trying so hard is a testimony to the instinct and the will of survival. He has been doing new exercises: moving his head, moving his toes and heels up and down, moving his arm up sideways, moving his hips right and left when standing, moving his upper body forward and back up, using his voice. He is doing better with all of these every day. I wonder what his ‘pain threshold’ is, how it compares to mine, when I think I’m reaching my limits.

One thing is for sure: I won’t be asking for an injection next time I’ll go to the dentist.

PS: Found a website today called Thinking Toys with amazing stuff for all sorts of gadgets to help with speech, cognition, swallowing and more. Worth looking at.

Life is not one story. Neither is what I’ve been writing here every day the definitive story. It’s my version of it. More, it’s one version of many of the versions I could share.

One day, maybe, I’ll be looking back at my daily accounts of Pádraig’s journey from ‘acute hospital to early rehabilitation’ and what I shared about the journey on this blog. What I have realised is that I need to write at least one other version, better two, about it: one a bit more structured and focused; the other a bit more open and less guarded.

At times I wonder how the story will end, what impact it will eventually have, whether it will leave any lasting legacy?

This morning we went to Pádraig’s gran’s anniversary mass in the ‘wig wam’, a church here in Glasnevin near where she lived. It’s also the church we got married in. We don’t go there very often these days, so when we were there today, I couldn’t help but to step back in time, remembering how I had waited there for Pat to come up the aisle, remembering my hopes and dreams and the excitement of it all. With very few exceptions, three to be exact, all my family who attended our wedding are no longer with us. A stark reminder of the one certainty in life.

After mass we had tea and the last bits of Christmas cake in Pádraig’s gran’s house with some friends and family. Pádraig was struggling a bit with the sausages but had no problems whatsoever with the chocolates. Some things just don’t change. It was nice to be altogether and to remember his gran in her house, not in a big explicit but in a quiet, intimate and very warm way – the way she was.

Got an email today from a physio in England telling me about two articles in “Frontline”, the U.K.’s Chartered Society of Physios magazine: one called Gym’s the Word and the other  Neuro gym claims it could save £60k on NHS physio service – both of which seem to confirm that physical activity, what the Royal Society of Physicians in Ireland, RCPI, calls the “wonder drug“, is not just good but absolutely necessary for anyone, even more so for anyone with a severe acquired brain injury (sABI).

And here’s the bit of news: we’ll have one in Ireland in 2017. Komme was wolle.

Two years ago today, a brave doctor pulled out the tube from Pádraig’s neck and closed his tracheostomy with a big plaster. We stayed with him in his room in the UKE day and night because we thought that he might suffocate as his doctors treating him in the other hospital had suggested. Well, he did not suffocate. Instead, there was no more suctioning, there was no more pushing a tube down his throat to take out the phlegm. All of a sudden he could taste and smell as air was passing through his nose and his mouth. And we could here his voice again.

Two years later, today, Pádraig went back into town, the Ilac Centre and Henry Street, into the shops, the supermarket in Dunnes Store and to Maplins. He had his breakfast, lunch, and dinner. And a drink, a banana and chocolate.

Life is full of risks. Some are worth taking.

It’s Nollaig na mhan” in Ireland today, little Christmas, or women’s Christmas – in most other western countries it’s also know as the Epiphany, or the day of the Three Holy Kings. Back home, many years ago, I dressed up with two of my friends as the Three Kings, and we went from house to house, singing and collecting money for a charity project. We always got some extra pocket money for doing this which invariably we spent in the local chipper. It was always a very special night for many different reasons.

Someone gave Pádraig an extra hour of physiotherapy a week for Christmas – a very useful and extremely generous present at the same time. You will have seen a picture of Pádraig and myself standing beside each other.

Well, this is what we’re going to be practicing during that additional hour. Not standing as we do already every day, but standing with a slight twist. For example swaying back and forth, as well as left and right; or lifting the heel and the toes up; lifting the foot and the leg up; holding the head and the upper body.

After today’s session, I felt like as if I needed a physio myself! But honestly? It’s brilliant and just brings home and reminds me of what Pádraig can do, what he can achieve, what he wants to achieve, of how far, literally, he can go with the right kind of support.

It is really hard work. I’m sweating when we are doing it and I’m tired when we are finished. But I would’t want to have it any other way. Because any other way it wouldn’t be worth it. And he is – as is anyone else in his position.

I wonder, is there something like ‘physios without borders’ we could engage?

Everybody’s talking and nobody says a word. Everybody is running and no one makes a move. Nobody told me that there were days like these. Strange days indeed.

Strange it is, too, how little has changed since John Lennon made these observations in 1984, though I think the nazis in the bathroom just below the stairs might have moved out and came out of the closet since.

While everybody half way computer literate has heard of and has most likely used Tripadvisor to plan and prepare their holidays, and while that portal has become more important for the tourism sector than the ‘official’ tourism guides – because the entries on TripAdvisor are written by travellers like me and you, and hundreds and thousands of them, continuously – there is no such ‘TripAdvisor’ for Hospi-tales or Rehab-Tales in Ireland.

In fact, you are very much encouraged not to mention persons delivering services, even if you don’t name them, nor referring to the name of the organisations they work for.

Compare that to Germany. And the following is just a sample.

• http://www.krankenhausbewertung.de
• http://www.klinikbewertungen.de
• https://www.aok.de/medizin-versorgung/
• https://weisse-liste.krankenhaus.barmer-gek.de
• https://www.bkk-klinikfinder.de
• https://www.tk.de/tk/klinikfuehrer/114928

Wonder why such rate-my-hospital,  rate-my-community-service, or rate-my-rehab portals don’t exist.

This was a very different mass. Most of the people attending tonight didn’t seem to know what was going on, despite the introduction provided just before the mass started by someone who was in the know.

It had taken me months of preparation and hard and dedicated study to become an altar boy the best part of 50 years ago. Back then it wasn’t just the ‘moves’ it was also the words, pretty long prayers to be recited between the priest and the altar boys that I had had to learn off by heart. In Latin. – And just when I had learned it all and was ready to go, someone somewhere in the hierarchy decided that enough was enough and that from now on, everything was to be said in German. You can imagine my disappointment!

Tonight I travelled back in time, beyond the birthday of most of those attending. Not sure what to think about it.

The mass was read to remember Pat’s cousin’s family, especially her cousin and her nephew who died a year ago under very tragic circumstances, making headlines in the papers and on Claire Byrne’s TV show. It was a death that should not have taken place. One that make you think “when will they ever learn?”, “where are all the flowers gone?”…

For some reason, I feel beaten today, wondering why on earth people have to die when they shouldn’t have to, why on earth young people are still being ‘managed’ in nursing homes, why on earth we hit a new record of 612 people on trolleys in hospitals  waiting for a bed, why on earth there isn’t a revolution in this country ending all this non-sense of blaming the flu, blaming the system, blaming the previous government, blaming Brexit or Trump?

I feel beaten with no energy left to argue or to fight. It’s so useless. To argue. To fight. The only useful thing to do is to do it myself, ourselves, and to show to the rest of the world that there are better ways to create a civilised, fair, equitable, caring and transparent society.

Liberally quoting what they say on those cooking programmes… Here is a piece I wrote earlier.

I always liked Janis Joplin’s song Me and my Bobby McGee. It couldn’t get much better than Freedom’s just another word for nothing left to loose. Freedom meant just getting rid of ‘stuff’ that was nothing but a burden. Freedom also meant being totally and completely and utterly independent. The idea was to follow your feelings (as opposed to anybody else’s), anything else made you a prisoner of circumstances spiralling out of control, tying you in to a straightjacket.

I didn’t really look at getting married, getting a house and having children – like in Pete Seeger’s Little Boxes song – as a step closer towards freedom. How could I decide where to go if that decision was no longer really mine? If everything had to be decided together and was dependent on a myriad of factors completely beyond my control?

When I did get married, had children, bought a house, even got a full-time permanent job, practically selling my soul to the company store, so to speak, life certainly changed. There were certainly fewer options. At times it felt as if there were none.

But as our family grew and as I realised that I was now ‘on the road’ together with some other people (!), that we were going to be on this journey together for the next while and that we all really needed, wanted, and loved each other – I did not miss this freedom anymore that is defined by ‘nothing left to loose’. In fact, freedom is not at all defined by what you haven’t got, but by what you have, by the people who are travelling with you on this voyage – no maps, riding out the storms, sitting out the doldrums, working together, learning to cope. Life is an ocean, love is a boat. The Dreamboat.

Pádraig (and us) are getting back to the normal routine after the Christmas and the New Year. Getting up early, going through the stretches, the exercises, going our for a walk, visitors, carers coming and going, structuring his day. We’re all tired tonight and it will take a few days before we’ll get used again to the ‘routine’.

But we have tons of stuff to luck forward to: from a walk down Santiago Way, to the start of the An Saol Project (fingers crossed), from brilliant concerts to good company, from mad adventures to insane fun!

Come with us!

PS: Life is a struggle, as well as a voyage. And at times it feels like I’m not winning. Like tonight. Though I know, it’ll be a different day tomorrow.