When you think it couldn’t it does get worse. Over the past days, family members shared stories that are almost unbearable to listen to. From what I would call physical assault (something that happened a good 20 years ago) to incredible delays in getting access to the most basic medical diagnostics, such as an EEG.

What The Irish Sun wrote today about Pádraig is an optimistic and positive view of the healing process that is possible. The tragedy is that it is a process that is happening despite, and not because of, the structures that are in place in Ireland to support injured like him.

In the story they ask their readers to help us find premises. – Maybe, just maybe someone will read this and say: I have an idea!

Today I promise myself that I will find a leat two carers, and two to three therapists that will help us support Pádraig’s recovery. I won’t care much about the cost. I will keep the receipts and send them to the HSE.

Who knows what will happen…

Today I started a retirement course. Yes. I can’t believe it myself. As it happens, as a spouse I got a free ticket. I’ll continue tomorrow. I learned as much about the attitude of old people towards gender as I did about retirement. It was unbelievable to see and to hear how clearly defined it was in some of the participants’ mind what the role of the male and the female partner in a relationship is.

Pádraig today got the satellite of love dish installed providing the free-to-air Irish channels as well as the U.K. and European Continental channels, including Spain and Germany. It took far too long to make this happen. But it did. Happen.

As will many other things. We just need a long breadth.

Pádraig met people today he hadn’t seen in many, many years – some were there from his primary school days, including teachers and students. There were neighbours, old and new, long time friends, and people who had just heard about it from the Parish bulletin or who had seen one of the many flyers that had been posted all around the area.

There were cakes of all shapes and sizes, tea and coffee, offered by really helpful and kind helpers who made sure nobody remained hungry or thirsty. Then there was the raffle with super prizes all organised by Marie and her friends. Neither Pádraig nor any of us had ever been at what has become an annual event by now, organised by Marie for ‘Caring for Pádraig’. We had just heard fabulous stories about the day – and today, we experienced that it was all true.

Without today, without the fundraising by Marie, her family, friends and neighbours and the friends of Pádraig himself, we wouldn’t be able to organise and pay for Pádraig’s therapies, he wouldn’t be able to receive the specialised intensive therapy sessions in Pforzheim, Germany. And without that therapy, Pádraig would not have made the progress he has made.

So, here’s to you!

How long it’ll last, nobody knows. That’s true for most things in life, even life itself. It’s especially true for those resolutions I adapt from time to time. (I’m sure I’m not alone here, am I?) But I am determined to do more to live a healthy life. Because I want to live a long, long life. Kinda have to, it seems…

Anyhow, not only have I started to ‘run’ again (5k this morning ending up in a big sweat) but I’ve started to eat ‘green’ stuff and fruit as never before – for the last three days:) Along with fish oil and chia seeds (apparently the “super food of the Aztecs” – though they’re not around any longer…)

Though I’ll make an exception tomorrow. Can’t wait for that coffee morning with all the nice cakes and tea and coffee and, above all, brilliant company!

We walked into town today and bought more ‘super food’, including bulgur, couscous, and quinoa. It all felt really healthy:) Now we just have to eat it. (Also bought a bit of steak, just in case.)

On the way back we got the bus. Pádraig had been on the bus here in Dublin a few times. For me, it was the first time with him. I had heard so much about how difficult it was to use public transport in a wheelchair. Glad to say that our experience today was really, really good. People, including the bus driver (!), could not have been more helpful.

Is what I’m writing here a true reflection of my life? What I feel? What I do? How I am and how we are getting on?

Certainly not.

There are organisations who do not want to be named. There are institutions who do not want to be criticised. There are individuals who do not want to be mentioned. And there are feelings I do not want to or I cannot share.

So what am I writing about?

A kind of sanitised version of what is happening? An account of how well Pádraig is doing? A very optimistic view of how An Saol is developing?

We were talking today about of how most of the news in Ireland is bad news: scandals, murders, accidents. And how, when we were in Cuba many many years ago, all the news were positive: achievements, success stories, stories of courage and accomplishment. I think, at times, what I am writing is closer to Cuba than it is to Dublin.

Will I change or just continue to write up a sanitised version of what is going on? What would you do? What makes the most sense? Does either version make sense writing about? Reading about?

Maybe versions of life are just that: versions? Always…

Imagine lying on your tommy with your feet straight up and your toes pressed against the floor. Now lift up your knees from the floor and stretch your leg. Try doing this a few times. Easy? – I know it wouldn’t be easy for me. That’s why we were all really delighted when Pádraig was able to do this first with his left, then with his right, and finally with both of his legs simultaneously.

What a fantastic achievement!

You will have heard of court settlements where the judge makes an award to an injured person based on their requirements established during a professional assessment. These requirements often include home care, therapies and equipment.

We managed to get an assessment from the National Rehabilitation Hospital for Pádraig’s home care needs (washing, eating, dressing etc.), hour by hour, day by day.

For some unknown reason, and although we asked several times, they were not in a position to supply the same for his therapy needs.

So today, I have started to look for people who have got a professional assessment of their therapy needs – just to see what that might look like. Haven’t been successful yet – so if you know anyone who had that done, please get in touch.

And, of course, please do not forget to pass on the note about next Sunday’s Coffee Morning in Marie’s house (85 St Mobhi Grove, Dublin 9, 11am-3pm), the annual fundraising effort and meeting of old and new friends of “Caring for Pádraig”.
See you there!

Join Pádraig in Marie’s house for the legendary annual gathering!

Invite your family, friends and neighbours to drop by!

The coffee morning organised every year by Marie since Pádraig’s accident is legend. This year Pádraig will be able to meet all his friends and supporters for the first time in person. Please pass this invitation on to friends and family. Marie expects to have a full house and garden!

The proceeds from this coffee morning have made it possible for Pádraig to avail of equipment, therapy and rehabilitation that he would otherwise not have had access to. The fact that he has recovered as much as he has is in a big way due to the tremendous support channeled through this annual gathering and the incredible effort Marie and her family have made.

This is one of these occasions that could make you terribly sad, or it could make you really happy. I know it made Pádraig really happy. He spent the evening at a going-away party of one of his best friends, in the middle of a crowd of people who he loves and who love him.

I was happy. Unambiguously.

Today, I was also happy because Pádraig managed to show us just another example of what he is capable of.

And if you think about it. Wouldn’t it be great if there was a professional who could develop and encourage and support him in developing and recovering even more? Putting it the other way around. Is the fact that there is no pro to help him recover even more an absolute scandal? If he can do this on his own (and a little bit of our help) – where would he be with the right kind of support?

Finally, here is the poster for this coming Sunday’s coffee morning. Please feel free to pass it on to anybody you know and who might be interested to join us!

We’ve had a really nice, quiet afternoon and evening. Relaxed, good-humoured, assisted by one of Pádraig’s carers and the regular ‘Monday evening with Pádraig’ visitor, back from holidays.

It was almost beautiful. Something not to be disturbed.

Of course, we know, I know and you know too, that life is not like that, not like that at all. But this afternoon, this evening, we enjoyed the moment.,

Someone I talked to today asked me three times whether I was positive about the future of care for survivors of brain injury. I am, I answered, in situations where you and I, people who truly care, are in charge. Because we will not tolerate mediocrity.

Large systems, large institutions, develop a dynamics of their own and are difficult, if not impossible, to control. And while I care about these, I am not so optimistic or positive about them. And I wonder whether they can be changed at all.

But about what we do, I am a Dreamboater. Not just optimistic, but convinced that, no doubt, no doubt at all, we will succeed in what we believe in: Compassion, justice, transparency.

We will not allow people with a severe acquired brain injury to be left behind and to just rot away or being treated badly, just because they cannot defend themselves. No way José:) Load and clearly and unambiguously.