There is an infinite list of hay-que-hacer things, stuff that needs to get done. One thing more urgent, more important than the other. Realistically, there is only a slim chance that even a fraction of the things that need-to-get-done so urgently and importantly will get done. It feels like living in the eye of the storm. You know you are surrounded by devastation but you find yourself in a place of unreal tranquility, managing, for the moment, to ignore what’s going on around you.

The only chance I see is that the storm won’t hit all at once.

Today was the day of the funeral. Pádraig and I stayed at home. We had a person coming in to test some equipment with Pádraig. A friend called in with divine croissants and unbelievably nice carrot  cake. In the evening, three of Pádraig’s friends called in.

Could it be that the storm just passed?

9 family members affected by severe brain injury got together tonight and changed how their loved ones are being treated, Together, they will ask the candidates in the forthcoming election to pledge their support. Together, they will build and use adequate neuro rehab therapy services. Together, they will take responsibility and show leadership.

On the ‘home front’, today was exhausting. We hosted a massive training session for Pádraig’s PAs, directed by NRH experts, with some input from community services and Pádraig’s GP. There is a rumour that this was the last big s.tep to get Pádraig a home care package. It was a good, yet very long day

I am utterly and completely exhausted but know that I will remember this day for a long time.

Not least, because this day, one year ago, a truly courageous doctor in Hamburg’s University Hospital, against the explicit advice of Pádraig’s neurologist and the whole rehab team, all of whom had branded us hope-against-hope parents, who wanted to convert the tracheostomy into a permanent ‘feature’, took out Pádraig’s tracheostomy and got Pádraig a bed, and us a reclining chair and a mattress on the floor for nearly two weeks.

If it had not been for us pushing and pushing, and insisting and insisting, against the neurologist’s and his team’s expert opinion, spending sleepless nights with fear leading up to this day, and more sleepless nights after this day one year ago – they had told us he might choke without the tracheostomy -, had it not been for this courageous doctor in the UKE who supported us, against the established and stated view of the ‘experts’, instead listening to us, Pádraig would now have a surgical, permanent tracheostomy.

Time to take responsibility ourselves.

Teresa Mannion of RTÉ did warn the nation: Don’t make unnecessary journeys! More than 1.5m people have seen her remixed weather report from the West of Ireland.

Today, Beaumont Hospital joined her call and asked the nation not to make unnecessary journeys to the hospital, not to attend their Accident and Emergency Department, because it was unsafe to do so.

Today, there were 558 people on trolleys in Irish Hospitals.

Today, Pádraig went to pay his respects to his cousin, not much older then himself. He fully realised where he was and what was going on around him. I have no doubt about that. Inexplicably, his cousin had been discharged from hospital, he had lost contact with his family for a couple of days, and was subsequently found in the Liffey by a search party.

Today, I had another look at the editorial in The Irish Times of 02 January which quoted HSE Director Tony O’Brien as saying that there is “no plan, no money and no vision for health in Ireland”. The editor adding that, “somewhat bizarrely, Minister for Health Leo Varadkar agreed with him”.

The editor went on to say that the HSE’s “dysfunctional culture remains overly focused on the priorities of staff rather than on the needs of patients. This is best illustrated by by its failure, not for the first time, to fully spend its mental health budget. Although acknowledged by all as the under-funded Cinderella of the health system, the HSE’s inability to put scarce resources to work for the betterment of a vulnerable group in society is inexcusable.”

14 weeks ago yesterday, upon his return, by car and ferry, from Germany, where he had lived with us in an apartment for 9 months, Pádraig had to be admitted to hospital so that he could be assessed for a home care package by the HSE. Today, the HSE still have not submitted the application for the package to the relevant office – and have not given us a date by when that will happen.

Tonight, I continue to be shell-shocked by the death of Pádraig’s young cousin. One of the last things we remember him saying to us was that he hoped that Pádraig would get better.

When will they ever learn?

You tell me over and over and over again my friend,
ah, you don’t believe we’re on the eve of destruction.

Mann, Mann, Mann. It’s really hard to keep up with what’s going on sometimes.

Here we are, still looking for “the space” for our neuro therapy centre (there are some first leads but nothing confirmed, so keep looking), and we already have the first quotations for equipment, the first part-time employee, the first volunteer and, naturally, three families ready to use it.

All this is really fantastic.

But we can do better.

On Thursday, 7-8.30pm, An Saol will host the first meeting of families affected by severe acquired brain injury (sABI), in Room 15 of the Carmichael Centre, Brunswick Street, Dublin. The focus of the meeting will be a pledge we’ll circulate to prospective TDs in the forthcoming elections as well as the plans for the Neuro Therapy Centre.

Pádraig is doing well, he’s not as good as he was before these ‘episodes’ started, but much better than he was for the couple of weeks just prior to Christmas. One thing I want to think about more is how it is that health professionals at times find it difficult to listen, to understand, and to trust families who naturally know their loved once (and their injuries) much better than anybody else. There is, really and literally, no competition. Of course, they all want to help and ‘do the right thing’. But there is no one ‘right thing’. People are different. Circumstances are different. Personal histories are different. Injuries are different. Hospitals are different. Interests are different. And you could go on… So there is, probably, no right decision – at least not a universally ‘right’ decision. Which is why it cannot be health professionals who take those decisions but the patients or, where necessary, their representatives, family members where appropriate. It cannot be health professionals. Not ethically. Not legally. And not using your common sense. Wouldn’t you agree?

Tonight we were listening to Kula Shaker. Never heard of them? Never listened to Tattva, Hey Dude, Govinda, Hush, or Sound of Drums?  – Never had I. But they are really really good. Really. Thanks to Pádraig’s friends who introduced the family (!) to Kula Shaker! (I’m still wondering how it comes that lads in their 20s discovered Santana, another album they brought in, I mean: Carlos Santana!!! He’s 68 years old!!!!) In all honesty, though, all of Pádraig’s friends, those I’ve met, have exceptionally good taste when it comes to music! And it’s music that makes you dance until you drop, that makes you want to ride a motorcycle with the wind in your hair, and that allows you to move weightless like a butterfly into a world of your imagination.

A couple of days ago, I had a look at my profile on LinkedIn and decided, for the first time since I set it up, to edit it. I added my ‘new position’ as the founder and CEO of An Saol. You wouldn’t believe the amount of messages I got from people wishing me well in my new position! The visitors to the blog almost trebled for the day.

The truth is that I had that ‘position’ for a while. Nobody else wanted it. Maybe because it doesn’t pay. At all, at all. But – it sounds great!

Today, I made an agreement with An Saol’s first real employee to be, to run An Saol’s Sara Walsh Therapy Centre and Services. (Still haven’t got the space, but that will come. No doubt.)

We’ll also have the meeting of families affected by severe Acquired Brain Injury (sABI) later this week.

An Saol is making progress and at times, like tonight, I think An Saol will really change the neuro rehab scene in Ireland. Once we get going at the beginning of April, nothing will ever be the same. (Don’t forget that we’ll need your help to make all this happen!)

Pádraig went to the NRH an hour today for OT – which was absolutely brilliant. It was a real pleasure to see the understanding between him and the therapist, and, above all, his command of ‘the switch’ – which he had not been using for quite some time. He’ll be back there again tomorrow for physio and the ward round.

Started to run again this morning and almost ‘died’ running up that never-ending hill towards Ballymun. Will start swimming again next week. Waiting for my friend to come up with an easy triathlon later in the year.

It’ll be all about doing it, not the position I’ll end up in:)

Space – The Ultimate Frontier.

Well, we’ll just have to take on and overcome that ‘frontier’. We wouldn’t be the first.

I haven’t got an offer for space for An Saol yet, but that’ll come. No doubt. You are spreading the word. Over the next few days someone will come up with something! Right?

No more frontiers.

We really really need this space – be it a bit of land to set up a prefab (for starters) or an existing space we can adapt (if needed).

Take a minute and post this request on your websites, Facebook pages, and tweet like hell about it! Of course, you could also use the old-fashioned way and call your friends and contacts. This bit we won’t be able to do it without your help!

We’ll start doing something very pragmatic and effectual because persons are neglected and subjected to a life that you cannot even imagine. You would not agree to send your parents to a nursing home? You wouldn’t want to go there yourself? Then just imagine for a moment that the only option for your child to be ‘looked after’ would be in a nursing home. For the rest of their life. At the mercy of an understaffed, under-regulated, and under-equipped system never meant to look after young persons.

Over the next week or so, An Saol will hold a meeting of families affected by severe Acquire Brain Injury (sABI). They need your help.

We had the best day for a long time with Pádraig. It was the first dry day and as two of his friends came over to visit, we went out with them to Griffith Park. After that they told him and us about there adventures in life. They left absolutely brilliant music for him that the two of us listened to when he had dinner.

A beautiful day with beautiful people full of life. The way it should be.

Here’s the deal. (And you will need to help to make this happen.)

An Saol will open, in three months’ time, the Sara Walsh Therapy Centre offering three-hour therapy sessions to persons with severe Acquired Brain Injury (sABI).

We will take three persons at a time each going on either the Erigo, the MOTOMed, or a therapy table. After an hour (or so) they’ll swap. We will have a lead therapist in charge of the sessions, with volunteer therapists and assistants as support. If possible, we’ll also offer music and cognitive therapy.

For starters, we will offer these sessions over three days: Fridays, Saturdays, and Sundays. This will give those the opportunity to attend, who are based in a nursing home during the week.

We need your help to:

• find adequate room for the Therapy Centre;
• fundraise to purchase the equipment (we will compile a list of equipment required, with cost) and to fit out/rent/set up the room;
• clarify the legal, health care, and insurance issues.

Are you in?

Pádraig is doing ok today. Still finding it difficult to eat. A bit drowsy and congested because of the medication (we hope to reduce once we’re as sure as we can be that he’ll be ok without it).

But Pádraig urgently needs adequate and regular therapy – as do all the other persons with sABI we know. And none of them are getting enough therapy – although, according to a special issue of the Archives of Physical Medicine and Rehabilitation, named by the famous The New Yorker as one of just six of the most interesting psychology papers of 2015, the only promising evidence for patients looking to regain function is: Rehabilitation therapy. And especially therapy that requires demanding physical or mental activity.

So let’s get going on this!

What about your new year resolutions? Have you made any? Are they different from those you made last year?

Usually mine are about eating less and better, moving a bit more and going for walks, runs or swims, and spending more time with family and friends. They’re usually the same. Every year. They don’t really change. So I’ve started every year with the same good resolutions. At the end of the year I usually feel that I hadn’t been so successful and so I start again, hoping against hope, that for some miraculous reason, I’ll be more successful next year. Maybe it’s my (catholic) upbringing that makes me believe that I can change. There’s always a fresh start. You just have to recognise and ‘confess’ to your failures and start again.

For the coming year, I’ve promised myself that I will not ‘play ball’, with all due respect, to the rules of others. Because ‘playing ball’ to rules that have been imposed by the ‘system’, to rules that are not transparent, to rules that don’t reference responsibility and accountability, cannot be in Pádraig’s, in our, interest.

For the coming year, I have decided to help people who need help in the best possible way. That will include getting a place and equipment and people to organise An Saol’s therapy sessions. It will also include becoming a louder voice and more visible advocate. And it will include fundraising.

We need this land or house or hall to get started!!!

Make it Happen! Happy New Year to all of you!

Memories can bring diamonds and rust.

Which New Year’s Eves do you remember? Diamonds. Rust. – ?

One of my memories is that standing on the open living room window of our 2nd floor apartment in Dortmund, looking out at the fireworks – looking at them because my parents wouldn’t allow me to go down onto the street and light my own fireworks.

Another New Year’s Eve, a few years later, I was standing, again, at the window of an apartment on the 2nd or 3rd floor. This time, I had chosen to stay in the room and, finally, play that record I had bought earlier that day and had brought to the party – but wasn’t allowed to play because it was to non-party like. It was Joni Mitchell’s 1970s Ladies of the Canyon album. I listened to this magnificent album alone in the empty party room on the wide open window and couldn’t care less about the world and people around me.

Then, there was the millennium. Both my (slightly) extended German family and my Irish family were in our house. Just before midnight we went out to Dollymount Beach which was supposed to be one of the vantage points to see Dublin’s fantastic Millennium Fireworks. It turned out to be, literally, a shot in the dark. There might have been fireworks somewhere, but none were to be seen from Dollymount. It was, nonetheless, a night I won’t forget. We were all together that night. Tonight, those who didn’t die in the meantime are in other countries or out and about. Tonight, it’s Pat, Pádraig, and myself.

Two years ago, it also was Pat, Pádraig and myself. We were in the University Hospital in Hamburg Eppendorf. That night, Pádraig was struggling for his life with SIRS, blood poisoning. As 2013 turned into 2014, Pádraig turned a corner and started to recover.

Tonight, he’s at home home.

Tonight represents another turn, a turn to live and living his life, with his family and friends, with the support and therapy he’ll need, the social life he’ll enjoy, the adventures of a true Dreamboat architect

We’ll remember tonight. As a diamond. Forever.

Ok, it doesn’t have to be land. It could be a house, even an old one. But we need a place, we need a base for An Saol. So if you should know anyone who has a bit of land, or a house, that An Saol could get access to under whatever conditions, please let us know. Even one big room would do. Or a bit of land where we could put a big prefab to offer therapies, to provide access to first class equipment, to have a regular meeting place.

We drove to the NRH again today for an hour of therapy, well – it was about 20 minutes, in the Erigo. Getting Pádraig ready and driving him over takes the best part of an hour one way. And we are lucky because we live in Dublin. Most of the time, Pádraig was the only client in the gym, usually a pretty busy place outside of the holiday season.

He is still on the anti-seizure medication which makes him tired and less responsive. It also makes it more difficult for him to eat. But his has been getting so much better over the past two days. I am sure that in a few weeks’ time this whole business will be forgotten and Pádraig will be going back to where he was before this whole business of involuntary movements started.

At that stage, he will also have access again to his daily routine of MOTOMed training and standing vertically to get the blood pressure going.

Music Link
I know you must have been missing the music links on the blog. So this being almost the end of the year, here is a really great gem. One of Pádraig’s favourite songs is “Waggon Wheel” by the “Old Crow Medicine Show”, tonight performed by Nathan Carter on his show on RTE One. Turns out, and this is the gem, that the song was written by no other than Bob Dylan – as all great songs were! Click here to listen to it.