I hadn’t been with Pádraig and his carers at their second half of lunch time service for some time until today. So I don’t know whether this is something that happens every day or whether today was special. They had so much fun doing exercises with him in the wheelchair, trying to get him to move his toes, his feet and his legs. It was really really good. Even to watch. And they all had smiles on their faces!

What a difference that made!

Maurice Marechal, who founded the French satirical weekly ‘Le Canard Enchainé’ in 1916, once said that “my first reaction, when I see something scandalous, is indignation. My second reaction is to laugh. It’s more difficult but more effective”, according to an article in yesterday’s Irish Times by Lara Marlowe – and an article by Eleanor Beardsley WGBH News of 29 December 2016!

I’ve said that to many people: Take what doctors and other health care professionals have told us and other families out of context. Get the stage in the laughter lounge. A room full of slightly (or even heavily) intoxicated people. A white, bright spot light onto the stage. And tell those stories. We’d make a fortune. Up to now, I just thought the whole issue is too serious to laugh about it.

I’m beginning to think: maybe that’s the best way to deal with it!

Imagine.

There’s a man trying to get therapy for his partner and he’s pulled out of a van by the police with his arms twisted behind his back who are removing his partner and him from the only rehabilitation hospital in the country.

There’s a family with an sABI survivor – struggling with the demands of daily life – supporting the setting up of an organisation to organise therapies and a life for survivors of sABI and their families and a doctor says that is a waste of money.

A mother collecting money for her son, a survivor of sABI, and a doctor telling her to save that money and to go and have a good time on the Canaries instead.

An acute hospital ward where you have a nurse telling the husband of a patient, “Look, I’m in a bad mood today. You ask my brother what it is like when I’m in a bad mood. Better stay clear of me”.

There is a brain injured person on an acute ward, with nurses present, who is getting out of bed, tries to stand, moves back and forth like a tree in heavy wind, and eventually goes to the ground – when, far too late, all hell breaks loose.

There is a doctor telling families that secondary injuries and illnesses such as dropped feet are not important – they can be fixed at a later stage, when they could easily be avoided and, in any case, can’t always be fixed and often require an operation.

There is a young man being brought back to Ireland with a sABI to die, never sees a neurologist, looses all his teeth (“he’ll never eat again anyways”), and then, after 20 years starts to get better, starts to talk, starts to eat.

There is a lady fighting for her son’s rights and is being told that they’ll wear her down and that she’ll come back begging for help.

And the list of laughter lounge material goes on and on and on…. and these are only some of the details I’m aware of. And I am not working in health care.

Anyone who would like to contribute more stories?

Honestly. If you didn’t laugh about this, what would you do? Get desperate? Start a revolution? Get onto the Dreamboat? Ignore it? Work the ‘system’? Write to your members of parliament?

I think we should publicly talk about all of these stories and attitudes. Not in a bitter way. Not in a hurt way. Not from the perspective of a victim. But in an engaging, interesting, matter-of-fact, and – if that helps – a ‘funny’ way to engage people.

Not –
Picture yourself in a boat on a river
With tangerine trees and marmalade skies
Somebody calls you, you answer quite slowly
A girl with kaleidoscope eyes

But –
Picture yourself in a bed in a nursing home
With white boring walls and windows blocked up
Nobody calls you, they don’t come to help you
Your left with nowhere to go

You might just be left with: Lucy in the Sky with Diamonds.

Pádraig never stop to amaze me. He knows exactly what is going on around him. He understands what people are saying. He hears us saying things. He follows the news. He watches TV. But we have not managed yet to get him sufficiently involved. Telling us what he thinks about stuff regularly, as a matter of course. Something to work on…

I visited a neighbour today who is in a nursing home and promised myself to stay at home no matter my age or condition. The good news is: she will return home next week because her husband decided she’d be a million times better off if he looked after his wife himself. Then I visited the home of another survivor of a severe Acquired Brain Injury today and his family and am in awe of their love, positivity and determination.

There are many people around us doing heroic works of love every day – often unknown to us. They are my heroes and my saints.

If you live in Ireland you might remember this bit of news reported by the national broadcaster RTÉ and other news outlets on 10 November of last year:

Harris ‘furious’ over HSE bed memo

Minister for Health Simon Harris has said he is “furious” over a HSE memo that said nurses could remove patients from beds “as trespassers” using minimum force in order to free up acute beds for patients who need them.

The Health Service Executive’s National Director of Acute Hospitals, Liam Woods, has apologised for any concern caused by the memo for hospital managers, which was seen by RTÉ News.

The memo was written by the HSE’s legal advisors and issued to Mr Woods on 11 October.

Yesterday, I checked out the Facebook page Amanda Denton’s partner Tommy maintains, called: “The help Amanda Denton get rehabilitation page“. The first post on this page is ‘pinned’, dated 21 July 2016, and reads as follows – apparently reporting an incident the HSE said would never happen:

At the end there is a link to a youtube video documenting the incident.

There was also an article in The Irish Times by Kitty Holland last August reporting on Amanda’s ‘treatment’.

i’ve been told on several occasions by several people to be careful about what I am writing in my blog. In fact, I had to agree not to write about certain things. The reason? – Mostly legal, I suppose. Ireland is a country were people and organisations like to sue each other for libel. And then: you wouldn’t want to upset anybody or fall out with anyone – after all, everybody is trying their best.

I met Tommy and Amanda when Pádraig was in the NRH. I know that there are different perspectives on everything. But tonight, I thought: there comes a time when you become so desperate that ending up in court for libel really becomes the least of your worries.

If you have a look at Tommy’s blog you’ll see that there are hundreds of people around the world sharing this view.

On a completely different note: it’s Pádraig’s big sister’s birthday today and we celebrated this very special day with her, with Pádraig and the rest of the family around a big warm fire, defying the bitterly cold January evening that it is in Dublin tonight. We are not just celebrating her birthday, but also the wonderful and very talented person she has become.

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.