I know all this. Sure, you know all this. Right? “Stay strong”. “Stay positive”. “Be patient”. “Never give up”. “It doesn’t matter how often you fall, what matters is that you get up again”. Right.

The thing is: I can do all this. But I am not alone. For some reasons I don’t remember right now, I have chosen to live where I live and make arrangements with the systems that pretend to keep the place I’m living in running. And it is those systems that make me despair at times. That make me do things I don’t have the time to do and don’t want to do. Things that take a lot of time but most likely will never make a positive difference. Things nobody should be doing – yet, because of where I am, I feel I have to do them.

If you look back at what I have been writing, quite a bit of it is about these things. Like: my view about inadequate services; my conviction that what is going on here are serious violations of human rights; the evidence I see almost every day that ‘lack of funding’ is the excuse – optimising spending the solution (e.g. by putting the people affected in charge of spending, not the agencies profiting from it), everybody agrees but nobody makes it happen.

Has it made a difference?

Is it really worth trying? I mean, the way I’m trying at the moment?

Systems are set up to make people comply. To make them fit in. To wear down anybody who’d ever dare to question them. At times, they succeed. Or: at times I feel like letting them win.

Where are all the flowers gone? – When will we ever learn? The man who asked this question, Peter Seeger, also has some ideas about how to make a difference and asks “Which side are you on?” — So even Pete experienced those mood swings: nothing will ever change because we will never learn on one hand, a call to fighting the good fight on the other. Maybe this is just part of who we are: at times it’s probably ok to feel a bit down.

PS: While I was looking for Pate Seeger YouTube brought me to Ani DiFranco (don’t ask me how they did this!). Never had heard of her, but if you have a bit more than 4 minutes, When I’m gone is really worth listening to. It’s an absolutely fabulous song that grows on you — and it absolutely matches up with my thoughts tonight, or rather: it provides me with the answer to my doubts, to the question at times eating me up from the inside, the question of “why bother?”.

And I won’t be laughing at the lies when I’m gone
And I can’t question how or when or why when I’m gone
Can’t live proud enough to die when I’m gone
So I guess I’ll have to do it while I’m here

I remember having read somewhere that dentists as a profession have the highest rate of suicide. Do you like dentists? — There you go. Have you ever been asked a question when you sat back in their chairs, mouth wide open, several suction devices, mirrors, pointy needles and latex-covered fingers poking around in your mouth? I mean, I’m struggling to breathe and not to choke on my own spit! How on earth could anybody even think I was able to talk? Usually, I’m not able to think, I’m so tense, my whole body nearly going into spasm in anticipation of this terrible terrible pain that hits your body when the drill hits that nerve.

But — not all dentists are equal (and what I said above is not really true about my dentist either:). Pádraig today went to see the dentist that had fixed his teeth over years using all sorts of sophisticated wires and pressure points. We were looking around in the waiting room and Pádraig recognised the funny pictures on the wall. And then we discovered that poster on the back of the door, advertising The Dreamboaters! Imagine! The dentist is one of us!

When it was Pádraig’s turn, he recognised the dentist immediately and gave him a huge smile. In turn, the dentist told him that he was really impressed by the good condition of his teeth and gums. So nothing at all to worry about. He gave the teeth a good deep clean (using tropical flavour!) and asked us to come back in a year. He said it was a pleasure to help!

On the way back home I thought: What has the world come to? Nothing is as it is supposed to be anymore! Nice dentists?! I mean… and this one is even a Dreamboater!

I always thought there were three kings, three wise men, who were there when Jesus was born and who brought him gold, frankincense and myrrh. Turns out that…

Scripture doesn’t tell us the number of “Wise Men” or “Magi,” and it suggests that they were not at the birth. The Magi are only mentioned in the second chapter of Matthew’s Gospel. Three gifts are mentioned: Gold, frankincense, and myrrh, but the number of men is not specified. Likewise, the Gospel account is not clear as to when exactly the Magi arrived, but it seems they may have come nearly two years after the birth.

Just shows you how our perception of what happened is totally influenced by the stories being told and the songs sung about historic events.

I had to think about this today because we went to an event where someone told us about the healing powers of essential oils, frankincense being one of these oils, and one of the most expensive ones. (And there was I, thinking that frankincense was burnt as incense…:)

Smelling all these incredible oils made me think not so much about their medicinal usefulness (we were reminded that T-tree oils kills lice:) but about the importance of using your sense of smell. The effect a particular ‘whiff’ can have on us. I wanted to take all these, as it turned out really expensive, little bottles, bring them home and rub their content one after the other under Pádraig’s nose. Sharing these incredibly intense, almost overpowering smells, from the simplest orange or lemon to the really sophisticated blends of the rarest oils from the far East.

How Pádraig must feel smelling disinfectant reminding him of more than a year in hospital. Of spiking temperatures and stuff with his body happening he didn’t control nor understand. Infections coming out of nowhere. Of being deprived of so much that makes life worth living: from fresh air to wet skin to food, drink and touch.

I am convinced that his unbroken spirit of adventure, his quest of discovery, his daily routine of really hard mental and physical work helping him on his way to recovery has to do with the absolute pleasure of being able again to do stuff, feel stuff, taste it, smell it and touch it.

Today, there was another first: he held his head up. Not high, but towards the front as he had always done. Something he had not been able to do for a long time. Something that looks easy but had been incredibly hard. Today he did it. For several minutes. Stunning all of us.

During the week, Pádraig had told us that he wanted to go on a hike. So today, we went to Bohernabreena to walk around the two reservoirs that were build in the 19th century to supply Dublin with clean drinking water.

It was supposed to be a 60-90 minute loop walk. It took us two and a half hours over everything from a paved road to a gravel path. In my mind, it must have been at least 10km we walked. Through sunshine and stunning scenery and a shower that lasted as long as it took us to take out our rain gear.

On the way back we stopped by a gastropub full of screens showing a soccer match. We had chicken wings, soup, a chicken caesar salad and three glasses of water. While everybody around had roast beef and a couple of pints. It was a brilliant experience, one I had never had in my life. Looks like this is what Sundays are all around.

Today, The Irish Times reports on page 4

Delivery man injured when mattress lifted by wind awarded €380,000 – Van driver claimed he hurt his back after being dragged along for four metres.

The man had sued the company that employed him, Etmar, (and of whom his brother is a director) for damages.  

You can read the full article, published online yesterday, here.

The judge said “he must conclude, from medical evidence, Mr Homan has chronic pain and on most occasions his pain is in the range of three out of 10 and, though chronic, is not usually severe”, according to the paper. The judge concluded, according to the Irish Times, that “the accident occurred due to Etmar’s breach of statutory duty and negligence. It failed to assess any risks, to train Mr Homan and warn him of the hazards” (…) of carrying mattresses.

Now — to the best of my knowledge nobody in the HSE ever assessed the risk to Pádraig of not receiving specialist, regular, and ongoing therapy. According to all the evidence available to me, Pádraig would most likely have been physically and mentally damaged had we not designed and paid for an ongoing inclusive neurological rehabilitation programme ourselves (with incredible support from family and friends). In accordance with common sense does that not amount, at least, and with the greatest respect, to negligence and a breach of statutory duty on behalf of the agency responsible for health care and, more specifically, for Pádraig’s health care, in this country?

My ongoing, chronic pain, on a scale of one to 10, is seven, with regular spikes to 10.

Luckily, the sun was shining upon us today and we had a brilliant few hours in the garden in the company of a good friend and her son who also has a very severe acquired brain injury. Life cam be good.

Later in the afternoon, Pádraig had the second swim this week. The improvements in his body control are incredible. They are small but constant. It is now possible to get him into and out of the water with just one person, and to do the paddling, the exercises, and the walking in the water as well with just one person. — In order to practice walking, the pool is nearly ideal as the water takes away so much of our weight that we can concentrate on the movements without having to worry about being able to carry our full body weight. Obvious, yes — but incredible no-one ever told us about this and no-one ever recommended and facilitated those visits to the pool.

Maybe no-one can’t? Maybe it’s us who have to do the important stuff in our lives ourselves? Always?

When I think back, I will remember four things about last week.

The incredible generosity of a person who passed on an electric wheelchair to Pádraig and sold an absolutely brilliant car to us at a ‘friendship’-price, a car we will use as a back up and for An Saol. The wheelchair will need to be adapted a bit, but once it is, we will go for driving lessons with Pádraig, most likely on a huge, empty car park on a weekend:)

The day a carer did not show up and the agency did not know where they were when I contacted it as I was concerned something might have happened to them – I had expected to be contacted otherwise. It took a day to find out that the carer had been re-scheduled to look after another client and would no longer be available to Pádraig on that particular day of the week. It’s like reverse engineering: doing stuff the other way around as they should really be done. Amazing. And, in my (very subjective) opinion, against all guidelines, best practice, ethical conventions and legal agreements in place. Our world is fragile enough as it is. We really can do without the uncertainty about whether carers turns up or not.

The anger about the continuous neglect of persons affected by very severe acquired brain injury in acute hospitals and nursing home. We know that people should not suffer and do not need to suffer further injuries while in care. Injuries like dislocations or pressure sores of any kind are man-made. Why are they tolerated?

A meeting today with a person who will help us organise a register of persons affected and their families, to develop better rehab services, and a peer support and policy group. Imagine: a one-stop shop for information coming from the people who have gone through or are going through the same problems you are going through. Never be left alone and feel abandoned by a system that is still telling clients and their families that helping them would be a waste of valuable resources. Imagine, if we created, together, an alternative? A system, where looking after the most vulnerable in our society is not a ‘waste of precious resources’ but a moral and ethical obligation, a delivery of their human rights, and – more – an absolute pleasure, involving huge efforts and humongous returns. Returns of the kind the people telling us to ‘face the facts’ will sadly never receive.

A funny day. Happy on one hand. Furious and really annoyed on the other. I almost want to forget about the really annoying aspect, but at the same time I am not sure whether that would be wise either.

It must have been the hottest day of the year so far. Sunshine. Sitting out in the garden with a piece of lovely cake and a drink. Who could ask for more? It was one of those afternoons when everything else fades into nothingness and the sun, the warm air, the birds, and the wind in the trees and the bushes bring unspoiled happiness. No bothers, life couldn’t be better. For us. For Pádraig.

It made me (almost) forget that I had written an email in the morning saying that a service that doesn’t deliver what it undertook (and is paid for) to deliver is in breach of contract when it doesn’t deliver that service for more than two years and when it reduces that service, when it should increase it, without any notice. Efforts to improve have not worked while the aspects that we have started to organise have been working pretty well.

So, really, I want to stop trying to fix what obviously cannot be fixed and push forward what I know does work. Makes complete sense, common sense, to me. But in practice, people, some people, don’t necessarily see it in the same way. The question is: how much do I care about that!?

It was Good Friday today 88 years ago today. As everybody gathered around the wireless to listen to the BBC’s 20:45 news bulletin, they heard the newsreader saying:

“Good evening. Today is Good Friday. There is no news.”

That update was followed by 15 minutes of piano music.

Today’s New York Times mentions this in their Back Story and add that “there was some major world news that day, including a typhoon in the Philippines and an attempted raid on an armory by Indian revolutionaries demanding independence from Britain, but it happened too late for the BBC”. They then provide a few headlines from the NYTimes of that day including one about Prohibition violations and another one on gas masks for horses that were doing well in military testing.

(I had heard this story from someone I usually trust a lot, but had not believed that this one wasn’t part of popular folklore.)

Back to the Future – Just heard on the News that last year one quarter of Ireland’s economic growth was based on the sale of iPhones. There are times when you wonder whether the ‘news’ themselves aren’t simply folklore.

In other news…

Pádraig spend a couple of hours today in the Trinity Hotel with a crew filming clips for a campaign to inform about the Assisted Decision Making Act 2015 – which will be enacted some time soon. It assumes that everybody is assumed to have capacity unless proven otherwise. It means that it will be Pádraig, not the HSE who will take decisions on their future, legally, and that others like him will no longer be made wards of court. A huge development that Pádraig will help to promote. Another really important role in his life.

The NY Times concluded with their review of past news of today by saying: “These days, it can seem as if the amount of news is limited only by the time you have available to consume it. But if you need a break, here’s some classical piano.

This morning, Pádraig used the low tech communication device that was prepared for him with input from everybody by some specialists. It’s basically a printed table of content that points to more detailed questions and statements in a small booklet with laminated pages.

“Do you want to talk about your clothes?” Oh my God, not again!

“Do you want to talk about your feelings?” Come on! Maybe I do but certainly not with you!

“Are you hungry or thirsty?” Are you for real? I just finished breakfast!

“Would you like to go for a walk?” YES! — Going into the details, following the pointers into the booklet, and half a dozen questions later we know that Pádraig does neither want to go into the Botanics, nor into the park, nor around the block. What he wants to do is go hiking. So this Saturday, come rain or shine, we’ll go hiking!

So much for taking charge, not just of his life, but of ours too:)

And then… later on… someone had the idea to ask Pádraig to push his wheelchair. First back.

And then forward.

While listening to really loud, really cool, really feel-easy, rock music.

What a pair of MASSIVE firsts! Moving the wheelchair by himself. Who would ever have thought this would happen one day? Deciding where to go!?

It’s massive and it is definitely the way to go. If you ask me.

Rehabilitation is not just about clinical stuff, therapies on this and therapies on that. At its heart its not about ‘therapies’ at all. What it is all about is finding a way back into life, participating, being integrated, taking part.

That’s what Pádraig did tonight in a hotel just across the street where a really interesting, lively and at times really witty debate chaired by Vincent Browne took place, involving, amongst others, one of our local TDs, Mary Lou McDonald. She remembered Pádraig and came over to say hello in such a friendly way that both herself and Pádraig didn’t stop smiling and laughing.

There were some historical figures present, like Nicki Kelly, who had been sentenced in 1978 for his (alleged) participation in the Sallins Train Robbery and about whom I first heard when I saw one of the famous “Free Nicky Kelly” graffitis in Cork where I visited the love of my life at the time. Someone had let his sense of humour loose and had added, under one of those graffiti: “…with every box of cornflakes!” Unbeatable.