If you missed last night’s first An Saol Seminar, you missed a real opportunity not just to find out about how to access HSE funding to pay for treatment abroad, but also an opportunity to listen to one of the most amazing, moving, and infuriating accounts of how a young man with a severe brain injury has been treated you’ll be likely to hear.

Where on earth does a family whose son is struggling for his life and who is desperately trying to cope with this new and incredibly difficult new situation, where on earth does a family have to take on a health system that is supposed to help them but seems to be determined to do the exact opposite of what it is supposed to do?

A health system that is fully aware of the fact that its services are not adequate – yet some of its key employees telling the parents that all their son’s needs are being looked after appropriately?

A health system employing senior staff that is telling the parents that all their brain injured children needed was hydration, medication, and nutrition? Maintenance.

Many years later, last night, the father was still so moved recalling what their son and they had to go through (and are still enduring) that he found it almost impossible to speak at times.

To be honest: I don’t like talking about a ‘system’ because the term is often used as a smoke screen. ‘Systems’ are not autonomous. People are. People design and implement systems. So if a system doesn’t work, it’s the fault of people – and it is in their power to change it.

To be fair: there are people who are trying really hard and who are doing the best they possibly can. There are people (working inside and outside the ‘system’) who are brilliant, supportive, compassionate and extremely professional. But they are fighting a lost battle. We need change.

Where’s the change we so desperately need going to come from?

The answer is, to paraphrase Obama (I think): WE are the change we have been waiting for and WE have to provide the help our fellow citizens need to desperately.

I am on my way to commemorate my mother’s first anniversary. This morning at 6.30am when I was about to go into the airport, there was a woman sitting beside the door. She tried to get my attention and I almost walked by. When I stopped she asked me whether I had a light for her cigarette. (Luckily, and I know how funny that sounds, I always carry a lighter in my pocket in case someone asks me that question – I still remember what it feels like to have a cigarette and no lighter to lit it.) When we managed to light her cigarette in the morning breeze after a few failed attempts she said, “You know, people just walked by because they thought I was a knacker – I’m not. I’m just drunk.” Thing is, there are no ‘knackers’. Just people who need our help.

PS: I spent some time with Pádraig yesterday talking about the plans for An Saol, the pilot project, and the fundraising we are planning for it. I asked him whether these plans were ok with him. Whether he was ok with us using his story, pictures, videos of him to tell the world that a brain injury, even a severe brain injury, is not the end; that if you keep trying very hard and if you get the right kind of help that you can get better and start to enjoy life again. He said that he was ok with all of this. Apart from working for his own recovery, he might just be in the process of discovering a new mission in his life, one that is more important than anything he could ever have imagined when he was planning his trip to Boston about three years ago, wondering what he was going to do after finishing College.

Just couldn’t think of another word to name tonight’s blog post.

No, it’s not about a Garden Centre. It’s about a number of things that happened today that brought hope and (to an extend) even certainty that our plans will be working out.

First and foremost, Pádraig is getting better. Since he started using the tilt table (no word yet about the mysterious standing bed) there are no more problems with oxygen levels. He is able to stretch his left arm again, almost straight, since we started to exercise it ourselves. He continues to cycle more kilometres every day by himself than I am running. He is eating and drinking better every day. Today, I asked him whether it is ok with him that we are organising the Boston cycle, that we will tell his story and illustrate it with pictures and a short video – and he agreed.

But then: Pádraig’s new garden plants were delivered. The garden will make a huge difference to him. Being able to sit outside in the summer, surrounded by this great garden will be priceless.

There was more to come: a phone call confirmed a meeting about space for the An Saol Sara Walsh Therapy Centre on Friday. Imagine, just imagine if that worked out! I cannot even begin to imagine what a difference that space if it materialised would make!

And yet another phone call: the bike, the famous Marin Bike,m arrived at Little Sports in Fairview. I won’t be able to collect it tomorrow, but I’ll get it first thing on Saturday. (I’ll be in Germany tomorrow for my mother’s first anniversary.)

Finally, An Saol’s first seminar was delivered tonight by Brendan who was one of the first successful applicants for HSE funding. What Brendan had to say was a real eye-opener!

Time to go to sleep.

PLEASE CIRCULATE WIDELY

All right – the idea of not shaving from last night’s blog is really taking off! (Have a look at last night’s comment:) — What would you think of a slight change of plan: start  on Easter Monday, and have the “Big Shave” the day of the raffle of the sponsored bike  in the autumn? It might make it easier to join if there is a (semi-)definite ‘end’-date?

I drove to Limerick this morning, as always really early to avoid the traffic. It was one of those really nice mornings, with the rising sun trying to break through the early morning fog, slowly revealing a blue sky in a crisp, clean air. Meeting colleagues, friends, and students in UL, being around the buildings, having lunch, checking the office — all was a really nice and reminded me of the privilege of the day job I took a break from.

Back in Dublin, I had a conversation with the therapist who was going to start working for An Saol from 01 April. Turns out she is not going to do it. So, I’ll start working on a job ad for a neuro-therapist tomorrow.

And — should you know of someone, or should you be someone, who would be interested in and enthusiastic about taking on this job of building up and leading the development of the An Saol Sara Walsh Therapy Services — please let me know!!!

Something I heard on the radio stuck in my mind. It was a quote by somebody who said that we don’t see things as they are, we see them as we are.

Someone today sent me to a link to a newspaper article with the headline:

Young victims living with brain injury in nursing homes due to funding crisis

When I looked it up, I realised that it was from 01 July 2013, just a few days after Pádraig’s accident. In the article it says that the waiting time for admission to the National Rehabilitation Hospital was 2 months — well, we were told that Pádraig had to wait a year for a place there.

Pádraig enjoying the sunshine in the back garden.

Something radical needs to happen.

Another Rising.

I had this crazy idea today: if I declared on Easter Monday that I won’t shave until we have the funds together for the proposed three-year pilot project, would there be people to join? – We’re talking about getting together 1.5 million euro.

Are you in?

Today was the last day of the Novena of Grace in Gardiner Street.

If you have ever been there, you’ll know the prayer to St. Francis Xavier, prayed each of the nine days by those who attend. There is a part that has always been especially important to me.

Each of the years I’ve gone to Gardiner Street, when this part of the prayer comes, I have had to think hard which favour I should seek.

There are very obvious, pragmatic ones. They change with the times.

Tonight, I realised that my prayer, the favour I’m asking for, hasn’t changed. Because it’s not a ‘hands-on’ miracle-type favour.

Ronan, Son, Hannah, Bill and Thi had organised a fundraiser for tonight in Kilmacud Crokes GAA Club. Four of those five friends met Pádraig once here in our house a few weeks ago. My guess is that their one lasting memory of that encounter is the moment when Ronan, who went to school with Pádraig, switched over to speaking in Irish with Pádraig provoking a huge smile on his face.

Tonight was table quiz night.

I went over to thank them all for having organised the evening – probably the first pub quiz for many of the students working with Ronan on the preparations for the night. I thought that I would most likely not know anybody there. And then, a lot of Pádraig’s friends turned up and made the night a really special night.

Not sure who came up with the questions, but they were extremely difficult – even to read some of them out was at times a challenge for the great MC for the night.

Thank you to all who put such an enormous amount of work into the preparation of tonight! Thank you also for all of you who attended the fundraiser – we promise to spend the funds wisely!

Here we are, trying to set up a service for persons with a severe acquired brain injury and we have to work our backs off to be even heard by the health service. They agree that this service doesn’t exist. They agree this service is badly needed. And instead of helping us to set it up, it’s almost impossible to be even heard. – Isn’t that mind-blowing?

We had ordered a bed and a mattress. Both custom-made. It took a few days to get the mattress. Today, the bed arrived. Turned out they got the measurements wrong.

A phone call by the carpenter who was setting it up. A big apology. And a delivery date of next Wednesday. That easy.

The bed is for us when we stay with Pádraig during the night.

In contrast to this custom-made bed which took about 3 weeks to get, Pádraig’s (in)famous standing bed has not even been ordered, as far as I know.

You wonder who is responsible for these incredible delays that don’t cause a mere inconvenience – as in the case of our fancy new walked – but serious health problems for Pádraig, as evidenced by the community therapists who got so worried about Pádraig’s oxygen levels they rang Pádraig’s GP a week ago.

I know life isn’t perfect. And people aren’t perfect. But there must be a way to do better than this. Because ‘this’ is not only unacceptable, it is not only contrary to the UN Convention of the Rights of People with Disabilities, it is dangerous for our family members’ health. And I mean: really dangerous.

Please tell your friends and attend if you can!

In the end a few of Pádraig’s friends were available this afternoon to go on tour with us. Two of them came along, the others promised to join some other Wednesday. Just to clarify – no need to be able to drive yourself, what I need is someone to come along to watch Pádraig, just in case he needed help when I am driving.

Pádraig under the tree – on the way back to the car park.

When the Queen comes to Dublin, or when Obama comes to down – they stay in Farmleigh. It’s an old house in a big park and, at some stage, it was owned by the Guinness family. Reason enough for the State to buy it, renovate it, and then use it to show off.

We got the last tour of the house, all for ourselves. It was bliss. And a bit silly, in a good way. Which chair did Obama sit on? Did the Queen have dinner on this table? Who can stay here? How much is a night?

Turns out a night in Farmleigh is one of those things you cannot buy. Like most important things in life. Money might make the world go ’round, but the moment the world stops spinning, its use evaporates.

These Wednesdays with Pádraig’s friends are turning into something really enjoyable and important. Hard to put into words exactly why or how. But really important.

Just in case: I’ll be in Germany for my mother’s first anniversary next Wednesday so will be going out again with Pádraig the following Wednesday, 23 March – if you were available to come along… that would be great!