Last night, having turned Pádraig, I could not go back to sleep. I stayed up and wrote an email. You know, I know, everybody knows that this is not what you do unless you want to get yourself into deep trouble.

I did it anyway. And I sent it.

It was an email to someone who cares about An Saol and brain injured people. The person had read the proposal for the An Saol pilot project and proposed that we should get the support of one of the established organisations. The person also raised some concerns about a certain message being sent implicitly to potential readers by the fact that those working in the proposed day care centre would be trained abroad.

What I wrote in the email was that here we are, knowing that the human rights of people with catastrophic injuries are being violated and that social justice is not being done. Now someone comes along and wants to change that situation, is looking for support and advice and is not getting it at home, but, surprisingly, abroad. On this background, telling me who I should work with, i.e. those who are not engaging to the extend required to affect change, did cost me a night’s sleep.

When I went back to bed, I had an hour left before I had to get back up. I went into a half-sleep, one of those that encourage dreams. My early morning dream was of Pádraig standing in front of me, supported by me, and when I let go he managed to stand all by himself. There was a rush of happiness going through my whole body.

When Pádraig was standing in his tilt table later on this morning with his arms around my neck and my body supporting his from the front, he started to give me a big big strong hug, the first really strong hug since his accident.

He must have had the same dream early this morning and together, this morning, we knew that one day, I will be able to let go of him and he will stand there all by himself again.

Someone said to me I should play the Lotto tonight because this was one of these incredible days you never see coming. It was a day packed with visits and activities. There were really brilliant people here from England advising us on different possible technical aids for Pádraig; people from Cork trialling out top-notch communication equipment; an engineer from the City Council who was just walking by the house and remembered that we had applied for a special parking slot for Pádraig – and decided to measure it all out to do the best possible job for him; an absolutely beautiful music therapy session; a person calling in to check all of Pádraig’s dietary needs were covered for Pforzheim; and a birthday boy – one of Pádraig’s friend – calling in for ‘Kaffeetrinken’.

What really and truly took my breath away, however, was this fabulous work of art by Pádraig:

It’s a ‘heatmap’, a picture Pádraig drew with his eyes on a screen – just by looking at it. He started in the bottom left corner. When I asked him to look to the top right corner of the screen he did that: he quickly moved diagonally up to the right (that’s the red narrow line going up and the bright red spot). He went back and looked at the spot at the bottom where he had started. Then I asked him to look up left. It took him a few seconds and then he looked at the left top corner of the screen (the blue line and spot). After that he looked along the bottom of the screen and then went up to the right (the multi-coloured spots on the right of the screen).

Here is a bit of a video recording to show how he drew the blue and red spots.

There are loads of reasons why this is not just absolutely amazing and a really great achievement – this has the potential to be life-changing for Pádraig. After the eye-tests, we had been told that Pádraig could not move his eyes into any direction but horizontally: this heatmap following his eye movements proves the contrary: he /can/ move his eye into any direction and he can do it when we ask him to do so. I asked him to look to the top right corner, then to the top left corner – and that is what he did. Because he can do this, he should be able to do, or learn to do, so much more with the eye tracker, especially in terms of communication. This is a system similar to that of Stephen Hawkins’ or Simon Fitzpatrick’s – both of them wrote quite influencial books.

The day, today, really left me breathless.

The famous Abbey Theatre is showing “The Plough and the Stars” by Seán O’Casey these days in front of a sold out house. Almost. The wheelchair space and seat for companion was available and so we went for today’s matinee. Pádraig’s first time in the Abbey for a long time. And another day of living life.

Me who risked more for love than they would for hate…

I’ll just mention to mention a meeting in our local health centre and leave it with that.

But I also wanted to mention that there are people who keep excelling in their wildest dreams, becoming true dreamboaters in the process. Last weekend, the mother of one of Pádraig’s best friends run, for the first time in her life, a half marathon. Not just any. But the one described as probably being one of the most beautiful marathons in the world, the Connemarathon. Only that last Sunday, there was hail and when there wasn’t there was horizontal rain. During the whole of the event. She finished in a brilliant time. And did fundraising in the process. How inspiring is that?!

Today was a day of making new friends, and meeting an old friend.

I went to Germany for the day, something I don’t remember I’d ever done before. Imagine, traveling a 1000 kilometres one way in the morning, and the other way in the evening. It cost slightly more than a return ticket with Irish Rail to Limerick.

I went to visit a place in Unna-Königsborn, a small town near Dortmund, where the regional government with the support of non-profit health care providers had decided 18 years ago to establish a “Modellversuch” (a pilot project) to find out how young survivors of brain injuries could best be looked after. I met their care lead, their social worker, their CEO, and their music therapist (the first music therapist I ever met who had a PhD). I learned so much today that it is hard to summarise it in just a few sentences. What they do there really touched me – because it was not about intensive neuro rehabilitation the way I have learned to think about (although there is a lot of therapy going on). It was not about the progress individuals make with the right help and support (although many injured there have made tremendous progress, even after many, many years). I was about a life in dignity and respect, about truly putting the person at the centre of all activity, about basic human rights – not matter whether a person was making progress, or whether a person remained in a state of a low or very low level of consciousness. It was about the idea that humans are not just created equal, their life and their rights remains equal – even with a very severe brain injury. About the absolute and categorical right to live their life as humans with all the help they require. Their was a deep sense of humanity, of true care in the most simple and at the same time the most complex way, of what I would consider to be deeply christian (or whatever other humanitarian believe system is closest to you). I looked at videos where someone with a tracheostomy stopped breathing for more than 40 seconds and started again, when I asked “where is the oxymetre – his oxygen levels must be dangerously low?” and got the answer “what difference would that make?”, when I saw the man recovering, stopping again, recovering, with no panic or obvious fear. I saw a video of the same man a year later playing a drum. Yet another year later having a conversation with his music therapist. I saw another young man being washed – not primarily to be washed (“he wouldn’t get that ‘dirty’ being in bed”) but to experience, to feel his body again, bit by bit. I saw and heard about people making dramatic progress even after 15 years – for no apparent reason; about others who didn’t – for no apparent reason. But all were treated like humans, never being ‘maintained’; all dealt with the utmost respect and dignity, participating in life. I heard about how the core concepts of the UN Convention of the Rights of People with Disabilities (CRPD) are realised, those of inclusion and participation, and many more. It made me think that this is what forms the core around everything else can be developed, the core that has to be got right before even thinking about anything more ambitious and complex.

Today, I found new friends who will join the An Saol Project. They will help, advice, share their knowledge and tremendous experience.

Today, I also met an old friend, by accident, one of the ‘original’ Germans in Ireland, someone I had not seen in decades. We had a bit less than an hour in the airport before our flight brought as back to Dublin.

Today was a day that really opened my eyes and mind, and I wish I’d have been able to share this with the professionals looking after Pádraig and others in his situation. I promised myself that we will one day and was over the moon when my new friends promised me to share what they do with us, to talk to us, to provide us with training and a deep insight into their work.

This morning, I went to check out the movie (“Would you rather be dead?”) we are going to show on 18 June in Screen 3 of the Lighthouse Cinema in Dublin. As you can see: it worked, subtitles and everything. Isn’t it a gorgeous cinema? And a brilliant screen?

It’ll be a great Saturday morning. We’ll have an introduction to the movie, show the movie itself, and then have a discussion at the end. There is room for more than 100 people, so please spread the word. We’ll start selling tickets soon and I’ll let you know where to get them.

Today was also the birthday of one of Pádraig’s sisters. Her birthday present to us was to spend the evening with Pádraig and give Pat and myself time to go out. And so we did. It was good to leave the house together and spent a few hours in a good restaurant and breathing in the air of the ‘other’ life: far too expensive and over-priced for what it was and me pulling the short straw when it came to who was going to sit where: I had a fire extinguisher pushing my legs in and a shelf behind my neck. It always happens to me, never to my lovely wife – who was sitting opposite me, looking not just at me but out through a huge window onto the street. Other than that, it was a pretty enjoyable evening. (And I learned to watch out for the right chair next time:) It was fun. My legs are slowly getting back to normal and the pain in my neck has almost gone as well. What remains is the memory of relaxed, un-interrupted conversations.

Pádraig enjoyed the birthday as well. There was far too much cake and other sweet things. Probably not so good for the stomach. But the fact he can eat the same food as us, drink the same drinks as we do, and sit with us around the table of our kitchen is just magic for all of us.

Pity I’ll have to get up at 5am tomorrow morning to catch a plane to Düsseldorf only to  come back in the evening just before 10. In between I’ll visit a model care facility in Unna, near my home town of Dortmund, something I’m really looking forward to, hoping they will join the An Saol Project.

Keep the date: Saturday, 18 June

We’ll start with a movie.

10:30 Lighthouse Cinema, Screen 3, Dublin

Would you rather be dead? (Wärst Du lieber tot? – German documentary with English subtitles. “Best Documentary” German TV Awards/Deutscher Fernsehpreis 2011.)

Following the movie, we’ll have some informal lunch with plenty of time to get meet old friends and make new ones.

In the afternoon, most likely from around 2:30, we’ll meet for a conference to discuss the An Saol project with international experts, politicians, and those affected.

A more formal and detailed announcement will follow.

Today, I decided to do a bit of a risk assessment myself. For whatever reason, I got angry with people having to do a ‘risk assessment’ often causing what I would call a ‘denial of service’ for Pádraig, either temporary or permanently, for no logical reason. What really gets me is that in most if not all cases the risk to be assessed is one for doctors, therapists, and PAs (carers).

While the risk to carers standing Pádraig up in the tilt table had to be assessed, NOBODY assessed the risk for him NOT being able to stand up, to bear his weight, to ‘walk’. The risk for him of not having the right equipment to do all this. The risk of prolonged bed ‘rest’. The risk of not having regular physiotherapy, never mind neurological physiotherapy (a 20-30 minute effective session per week, most weeks, not every week, is clearly insufficient).

So here is a list of the effects of bed ‘rest’:

• Psychological effects
• Physiology
• Cardiac effects
• Fluids
• Water balance
• Diuresis, natriuresis and dehydration
• Skeletal muscle pump
• Stroke volume
• Cardiac deconditioning
• Postural hypotension
• Respiratory effects
• Lung volume changes
• Structural changes
• Haematological effects
• Blood viscosity
• Erythropoiesis, red cell mass and total haemoglobin
• Oxygen transport
• Virchow’s triad
• Potential for emboli

If you think: wow! Incredible! I wasn’t aware of all these risks!  — Think again, because this is just Part 1 of the ‘effects’ of bed ‘rest’. Part 2 examines the effects of bed ‘rest’ on the digestive, endocrine, renal, reproductive and nervous systems. You can find it all here, (if this link doesn’t work, try this) together with an exhaustive list of relevant scientific references.

For an alternative view, you could check here: “Effects of prolonged bed rest”. The introduction to a long article with loads of details states: “Bed rest” may sound like a gentle, healing process, but this is deceptive. Our bodies are made to move, and multiple problems quickly start to set in even after a couple of days of immobility. DAYS!!!

So, if professionals know this but they or the service they represent don’t act accordingly, what is that?

If someone (a doctor, a therapist, a …) observes a low level of oxygen in Pádraig after months of not standing and in a situation where he receives virtually no (effectively about 20-30 minutes in some weeks, none in others) adequate physiotherapy, should they be surprised? Or should they have moved heaven and earth to get him the right equipment to get him standing and get him moving on his feet timely and together with sufficient and adequate physiotherapy? And if they don’t do this, what is that?

If not a terrible risk for Pádraig. – And if it is, what are we going to do about it?