Stop

We met friends. One of Pádraig’s, one of mine. And we saw queues. Thousands of birds on the beach (you can see them in the distance just on top of Pádraig’s head) and dozens of people in front of the coffee container at the end of the bridge out in Dollymount.

Meeting friends is always nice. Even nicer when it is unexpected. So when a young man shouted ‘Schaler’ and came over to greet Pádraig, the enthusiastic greeting and subsequent conversation put a huge smile on Pádraig’s face. When, later on, we met an old friend of mine with his sone, Pádraig smiled too, politely, but had to be patient because we spent a little time catching up on our lives.

There were thousands of birds on the beach, just along the waterline as the tide was coming in. It looked as if they were having their dinner. Their calls and the sound and smell of the water were magnificent. Being able to walk along the sea shore so close from your home is brilliant – and completely underrated here, because it’s such a ‘normal’ thing.

What we both didn’t quite understand were the people queuing to buy coffee while checking their phones. Mostly ignoring the spectacular scenario mother nature was offering.

You have to stop and do nothing from time to time to become aware of what is going on around you.

Shopping

This was serious navigation. Pádraig’s wheelchair is, like himself, a little longer than average as it is. Today, he was ok to try out a wheelchair trolley in the supermarket where we did our weekly shopping.

The trolley attached to the front of the wheelchair doubling its length and increasing the weight of what had to be pushed as we were passing shelves and fridges, working our way through our weekly shopping list.

There’s loads of stuff Pádraig has been doing for the first time again over the past months and years as he has been recovering from his injuries. Today’s tour d’supermarché was a first for me – most definitely something I would not have done in the early days after Pádraig’s discharge home when I had problems pushing the wheelchair on the footpaths, never mind in supermarkets.

Now, as today showed us, now we are a great team working together on all sorts of daily chores.

Who would have thought, we’d be doing stuff like that together, trying out new gadgets together, sharing the weight?

BullRunning

The Irish Government announced today that they will follow the example of their Finnish counterparts and, from 2019, publish, on the internet, the income and corresponding tax paid of all people resident in Ireland on 01 November.

I just could not imagine what the reaction would be in Ireland to such an announcement. Yet, that is precisely what Finland does on 01 November, their “National Jealousy Day. Check out the report below.

Dmitry Kostyukov for The New York Times
• It’s Finland’s equivalent of the running of the bulls.
Each Nov. 1 — known as “National Jealousy Day” — everyone’s taxable income is made public at precisely 8 a.m., and Finns start poring over the numbers. Above, journalists at a tax office in Helsinki on Thursday.
Reporters look for fodder — Who might be circumventing taxes? How much did the country’s best-known pornographic film star make? — and ordinary people take stock of inequalities both nationally and in their workplaces.
While there are some complaints about the invasion of privacy, many Finns told us that the ritual baring of incomes promotes egalitarianism, deters cheating and can make it easier to ask for a raise.

Long conversations with carers about their employment. No walks outside despite the relatively dry weather. Firmly planning to get out tomorrow.

Hugging

Some work in the morning, off to a meeting in DCU, training course with HSE, discussion with some of Pádraig’s carers, off to an event in the Helix commemorating Pádraig’s and our friend’s Louise’s life and contribution to the university, home at around 6pm. Tired.

Watching a food programme yesterday, I heard a dietitian saying that it is, of course, important what you eat, but it is, at least, equally important that you are happy. If you are not happy, bad stuff starts going on in your body which will, or at least has the potential, to eventually kill you. She said that with such a conviction that I was shocked. I never had heard anybody saying that with such conviction.

Giving kisses, hugging people, smiling – all these things will make your life better, healthier and longer.

I talked to someone this morning who told me that he would gladly accept the An Saol Foundation under their umbrella and as part of their organisation. I know this person would not have been interested in severe acquired brain injury, or in helping anyone with one, if there weren’t that funding.

The world is a strange place.

And today is the first day of Cúram Phádraig’s official day of operation, organising Pádraig’s personal care.

O-A-I

Over the past days, a few times, ‘assisted’ by swallowing a drink in some strange way, Pádraig managed to say ‘O’s, ‘ A’s, and ‘I’s once, twice or three times when asked. We have been hoping for his voice to come back and there have been signs that this will happen. Being able to say, in certain situations, these vowels a certain number of times is not a miracle, just another sign that this will eventually happen.

Have a look at the following list and try to spot the odd one out. The list is from a brain injury workbook. It’s not that difficult to do, but it’s also not that easy either, I think.

How did you do? Did you have to think about in some lines which one was the odd one out or were they all immediately obvious? I did not even know all the words and had to ask what a ‘poplar’ was and what was meant by ‘trotters’.

Pádraig got them all right. And he loved it. Whether it was easy of difficult, this kind of ‘game’ is, most certainly, exercising the brain. And that is, science and experience tells us, as important as exercising the rest of our bodies.

Half an hour a day. Minimum!

So keep it going!

Scary

There’s tons of scary stuff going on out there. Frightening stuff. I think everyone of us would have a story to tell were they asked to do so. One that would frighten the living daylights out of everyone listening.

Pádraig today carved a truly scary mask out of a real pumpkin.

“Health and safety” was suspended for a time as he took the knife and got to work.

It was one of his best friends who had brought the pumpkin to do the carving. It was so good, the interaction so lively, the way he found out from Pádraig how he would like the pumpkin to look like, the ‘yes’ and ‘no’ questions, the preferences, even the alphabet chart – it was so incredibly good, I stayed out of the room and let them get on between the two of them.

The result was truly scary! Even before the put a candle into the centre and set it alife.

Tuesday is swimming day. And swimming had been really good.

But nothing, nothing in comparison with the afternoon of scary pumpkin carving with his friend!

Chat

Not having to cook is great. Having dinner in great company and with great chat is near to impossible to beat.

We had both this evening. We went for dinner to the house of one of Pádraig’s really good friends, a family who have helped Pádraig and us along for many years. It was a really nice dinner. But what made the evening truly special was the exceptional company, the chat, the laughter, the normality of life, the being together and enjoying each other’s stories and opinions and laughter.

Adjustment

We often think things happen. We can try hard but, in the end, things are out or our hands. “Man makes plans, and God laughs.”

I often thought over the past five years, that God must have had a real great laugh looking at me making plans. Because all too often, I’ve felt totally and utterly helpless.

One thing though God has given us is free will.

And while he might have all sorts of plans for us, there’s no way she’d take that free will away from us. Meaning that *we* can decide to go right or to go left, to speak up or to stay silent, to love or to hate.

You might know “The Adjustment Bureau“. The last scene kind of explains what the movie is all about: taking charge ourselves, exercising our free will, blaming nobody else but us. It’s worthwhile watching:

Love moves everything. Even the ‘chairman’s’ plans!

Persistence

A good friend sent me pictures this morning from way back when we were ‘young and fit’, he said. They were from the day of the Dublin marathon we both ran and finished, he in a very respectable time, myself happy to have finished it.

Earlier this year, I had registered for this year’s Dublin marathon because I feared it would sell out as it had for the past couple of years. When I registered, it seemed like I had plenty of time for practice and training. And then, during the summer, there was no time at all. In fact, the summer was so intense that when it was over, I got the flu for close to two weeks. Now, I have been coughing for two weeks with no chance of even walking the 42 km tomorrow.

Nonetheless, I went to the RDS to register and collect my racing bag. What a mistake. I had felt bad about not being able to get up and running before. But when I was there with hundreds of people being all excited about their big race tomorrow, it made me feel worse. Because I really wanted to do this tomorrow. Just that tomorrow won’t be my race day.

I’d love to say that there is a valuable lesson in this that I’ve learned. Something like that you have to accept that certain things will not be possible, no matter how much you would like to do them or how much you would like to see them happening.

The reality is, however, that there days I find that hard to accept.

I talked to a few families today about that recent RTÉ Investigates programme. They all told me about their own very similar experiences. And they all said that they don’t know how Patrick Fitzgerald manages to deal with the situation without going mad.

I’d say not being able to run the marathon would be the least of his worries. More likely, it would not be one of his worries at all.

I am grateful that there are people like Patrick Fitzgerald and his family around to raise awareness about the lack of appropriate care and rehabilitation for persons with a very severe acquired brain injury.

Voting

Pádraig cast his votes both in the referendum and in the presidential elections. The referendum vote was obvious choice for him and pretty straight forward. Almost too predictable to even mention. His vote in the presidential elections, by contrast, was more complex and involved the voting for his number one and for his number two candidate.

It was wonderful to see how normal it was for him (and all people in wheelchairs) to exercise their right to vote. This was inclusivity in action! There were even specially adapted booths and really helpful staff.

Well done, Pádraig!