I kept the name of the blog because I think it’s catchy although, thankfully, it wasn’t about hospitals anymore but rehabilitation. Well, Pádraig is back. Another true hospi-tale we had hoped to have left behind. Thankfully, I have a bed at his side and can stay with him.

This is low tech, compared to when Pádraig first hit the hospital scene. Because he is so much better. He has no machines attached to him and he himself had decided to have this procedure done in an attempt to fix his hip and allow him to stand on both of his feet. He picked his (somewhat limited) menu for his stay, aiming for the meat dishes, rather than the vegetarian or cheese options. The aim is to get him standing and walking again, with help – but standing and walking.

The big day arrived and delivered, for now, what Pádraig had been looking for: he can stretch his right leg again and stand on both of his feet. The real difficult part now will be to get his physio absolutely right so that all this pain will be worth going through! So that he can get back walking. With help, but walking.

With temperatures of 30o-35o Celsius, we started the week on another two-day, nearly 1000 km road trip to Munich from the North of Germany before being admitted to hospital on Wednesday.

Day 1, Wednesday

We arrive at around 10:30, through the COVID security check, straight up to the ward where we get a double room for Pádraig and myself. The programme for the day: talk to the junior doctor on the ward who explains the operation to us, sign a form saying that she did, a new x-ray of the hip, anaesthetics department, blood tests, ultrasound department. We get to know the hospital. By the time we finish, it’s dinner time, at 5pm (!). We have missed the surgeon who was to see us on the ward.

Day 2, Thursday

Pádraig is first up at 8am. At half seven, the surgeon briefly checks in with us and wishes Pádraig all the best re-assuring him that this will all work out fine – which is very kind and nice of him.

In Germany, 8am means 10 minutes before 8am. I walk with Pádraig, in his bed, to the pre-surgery where he is transferred to a different ‘bed’. They check his name, date of birth and the two ‘x’s, one on each leg, marking where they will work on him.

After that I go back to our room and get, a nice touch, two coffees with my breakfast. And then the waiting time begins. Not just here in Munich but in many places around the world. It takes far too long for our taste but eventually I am called in to the recovery room where they think Pádraig might still be ‘asleep’ until he tells them with his bleeper that he is awake and has no pain.

Back to the ward. The rest is an auld long, boring day. The hospital is secured like a fort and when we try to plead with security saying that our son has had an operation they ask us for his age. Even before I open my mouth to say that he is 30 I know what the effect is going to be. I am right. We have to wait until visiting time at 5pm.

Padraig’s legs are all bandaged and he is getting what looks like tons of pain killers. Despite all that, he eats and drinks well – and really enjoys the ice cream. It’s still roasting in Munich.

We get word that we should be able to move to Burgau next week for rehabilitation. I’ve lost count on the amount of times we packed the car with millions of bags and moved them to another place in the past few weeks. Luckily, this time it’ll only be about an hours drive.

Day 3, Friday

Taking bandages off, standing on both feet, resting, short physio session. A bit of a routine settles in. It’s still hot and even if it cools down outside during the night, that doesn’t make much of a difference here inside the room.

I am remembering that Germans don’t do cereals – and if they do, they don’t know what to do with them. Asking for a portion of porridge or cornflakes of Wheetabix here in the Fatherland is like asking for steak tartare in Ireland. You wouldn’t know what they’d make out of it.

Can you spot the breakfast portion of cereal they sent up for Pádraig in this picture? I mean, lads come on: this if a tub for marmalade, not for cereal!

Day 4, Saturday

Weekends are quiet. Especially on Ascension Day in Bavaria. It’s a public holiday and all shops are closed. But visiting hours are four instead of just two hours. We decide to do a bit of a physio session ourselves, stand Pádraig up.

We get him dressed and go out for a walk in the park trying to find an ice-cream shop.

In the evening, we watch movies – the end of ‘Arrival’, a movie I liked before but now watch in a completely different way. “If you knew the future, would you do it anyway?” – is the central question of the movie for me know. And a resounding “yes” is the answer. We start watching “In Bruges”, one  Pádraig’s favourites. I think he knows the dialogue by heart.

We’ll most likely be here for another few days. We’ll go for another walk tomorrow. We’ll watch the end of that movie. Buy another ice-cream. We will even continue with some gentle physio. Life is not that bad (it has the occasional setbacks) and always has happy, even funny, moments.

I want to say a big, big THANK YOU to all of you who are always asking, and especially over the past week, how he was doing, who were thinking of him, sent good wishes, crossed fingers, lighted candles, prayed, sent good vibes, encouraging messages. Without that shared energy and the fundraising so many people organised, summer coffee mornings, wintersongs, school cake sales, dusk to dawn tennis, Mongolian rallies, a (barefoot for some) climb up to Croagh Patrick that had to be cancelled at the last minute because of COVID, a mindful solitary walk over many weeks during COVID, personal and family support, and much more – we could never have done what we could do to get Pádraig the treatment that he needs so desperately for his hip and legs. He is a trailblazer and so are you. Showing the world that live and living with a severe acquired brain injury is possible. That obstacles and setbacks can be overcome. Together.

Soon the wait will be over. On Monday, we’ll make our way back down South. One overnight on the way, one overnight in Munich, check-in at the hospital on Wednesday, intervention on Thursday, check out on Sunday or Monday, rehab in Burgau. That’s the plan. I can hear God laughing.

We are going for the occasional walk along the coast. The quietness and serenity in some parts are stunning. The wide, empty spaces make the mind go wander. It could go anywhere. Wandering and wondering.

As tourists from the North can’t get down to Southern Europe to enjoy the sun, a few days ago the sun decided to move up North. Blue skies, soaring temperatures, no wind. Fabulous if you enjoy the heat. A few degrees less would do me just fine.

I have been wondering about the effect of ongoing, sometimes endless-feeling uncertainty. As if I didn’t know it myself, I googled it. Here is the answer of an expert.

Apparently, we have a “hunger for certainty”. Our brain “craves certainty and avoids uncertainty like it’s pain”. We dedicate massive neuronal resources to predicting what will happen. Consciously, we base our predictions on what will happen on around 40 environmental cues that we scan constantly. Subconsciously, this number is over two-million (who counted?!). We dedicate huge resources to constantly process this incredible amount of data subconsciously because it is part of our survival instinct. We need to be careful, we need to try to predict the future, we need to recognise patterns. If that doesn’t work for some reason, we feel that our life is under serious threat. Whether we are hunters and gatherers avoiding natural enemies, or sophisticated city folks trying to cross the road without being hit by a car.

That’s why our brain is addicted to certainty. When that craving is met, we feel good. When that craving is not met, a threat response is instinctively triggered and our brain automatically switches to alert. Just a little ambiguity and the amygdala, the primary structure of the brain responsible for our conditioned fight or flight response, kicks in and lights up.

Just thinking: a lot of what is happening during this pandemic probably has its roots here. And some of the reactions can be explained this way. Shutting everything down brings certainty. Though probably only short-term. Even hunters and gatherers had to leave the comfort of their home, the security of their known surroundings, to get food in order to survive. It’s probably all about a healthy and workable balance. Leaving your comfort zone, pushing the limits, is good for many reasons and, ultimately, necessary for survival.

My problem is that some patterns I recognise feel like threats. Instead of giving me certainty and making me feel good, they put me on high alert. That amygdala of mine is lit up like a flood light too often and for too long.

I guess all this amygdala business is not good for you if it goes on for too long. Hopefully, next week will make our lives a bit more predictable and bring a bit more certainty (in a good way). Less uncertainty. Less threat. More feel good. Rest for the amygdala. At least for a while.

The message is: life is for living. It might turn out different from what I had imagined. It might have aspects that are difficult, challenging, unjust, even cruel. But it also offers me incredible beauty, enduring friendship, deep humanity, and love.

The best way to live it is to persevere, to ‘keep the eye on the ball’, to keep a sense of wonder and amazement, to love. To get into ‘good trouble’.

Life is not for checking out.

Some things on the telly used to bring tears to my father’s eyes. A sentimental movie, a report on history, or the Pope giving a sermon. While I saw the point (sometimes), I thought he was a bit overreacting. Looking back, and only now I start to understand, his life must have been packed with trauma. He was 19 when WWII started. The lead up to that war, the war itself, and its aftermath shaped what should have been the best years of his life.

This past week, we watched some of John Lewis’ funeral. I don’t know that much about John Lewis. But what I heard about him moved me to tears. He was 20 years old when he first got into ‘good trouble’. Just before he died he apparently talked to some young people and told them that he was very hopeful for the future because of their perseverance, their good fight, their love.

Maybe this was just a demonstration of how well the US do funerals. But for me, this was a demonstration, a recall of values, that I always admired them for. You do what you believe in, and you don’t harm others while doing it.

We went to a doctor to get Pádraig tested ahead of his hospital admission. A poster on her wall hinted at how she sees hospital discharges into the community. It made me think of Pádraig’s discharge. There was no plan for his rehab. I still had to smile.

We are doing well and we are doing the right thing. Pádraig is enjoying the good days. While we are very busy, while I am tired and feel exhausted, we are spending all this time together. Tomorrow week, we’ll be going on another nearly 1,000 km road trip down South to Munich. Following a relatively small procedure and a few days in hospital, Pádraig will be able again to put weight on his right leg, all going well.

We have a plan and it’s the best plan we could come up with. Now we’ll have to keep the eye on the ball.

Ithaca can wait.

We have a plan. The least invasive soft tissue, muscular intervention possible. It will take just over half an hour. Recovery will be a few days in hospital. Rehab will be a few weeks. The expectation is that, with a bit of luck, Pádraig’s femur will slide back into his hip socket, his knee and hip will not hurt him. His balance and right leg movements will feel different and really good rehab and exercise will be crucial. Nearly sounds too good to be true but it is worth giving this intervention a try.

Last Monday, Pádraig had an appointment with a consultant in Munich, Tuesday we were in the Therapy Centre in Burgau, the last few days back here in Pforzheim. Having listened to the people we trust and some new experts, Pádraig was happy with this decision and we decided to go for it.

The hospital is booked for 12 August. Rehab will follow.

Given the circumstances, we’re going back North. Two days on the road. We’ll go South to Munich in a bit more than two weeks’ time. Another two days drive.

We’re getting really good at packing and unpacking. (Good practice for the trip to Alaska.) Living a few weeks or sometimes even days here, another there. Having had the opportunity to talk to what are probably two of the four experts in the field of neuro-orthopedics in Germany, to some of the best therapists and neurologists, really helped us to understand Pádraig’s hip problem and to agree to the plan we’ve got now.

How do I feel about it? – It’s good to have a plan and to know where we’re heading. That’s a big improvement from where we were a month ago. I feel lucky that so many people were there, when it mattered, to help us. From the advice we got, the time people took to think with us about the options, to writing the referrals, to just staying with us.

How do I feel about how we got where we are now? – It has been complicated and involved and exhausting. It didn’t have to be like that. And if you ask me, it should not be like that.

There are so many questions in my head and most of them have the same answer: those with a severe Acquired Brain Injury, like Pádraig, are not on the radar of the vast majority of health care professionals. They aren’t because they don’t matter anymore. We are lucky because we have found people, friends, who don’t share that view. They make all the difference.

We now know that the hip problem Pádraig developed is a well known and pretty common secondary complication of his initial injury. It always needed expert attention and could not be dealt with by doing a few stretches.

We are on an Odyssee when we should be in Ithaca. But then – isn’t that what life is all about, the journey? Ithaca is the final destination. We’ve plenty of time to get there.

Comets are named after their discoverers, up to three of them, and their names are hyphenated together, if possible with dashes between them. So who is NEOWISE?

This week was about learning and remembering. Learning new names like Firbrotomia, Myotomy, Fasciotomy, Myofasziotomy, Angulation Osteotomy, Girdlestone, and medication like Mydocalm and Dronabinol. Remembering how some doctors view their patients: as ‘issues’ or ‘ailments’, rather than persons with a history, a personality, a social context, and so much more. I had to think of the garages that Pádraig’s car spent so much time in this year. Cylinder head, air conditioning, tyres, turbo charger. On second thoughts, the mechanics spent a lot of time checking the whole car out, its condition, its age, the way it was used and what it was used for. Lots of things to consider to get it right.

We went to the  Heidelberg University Orthopaedic Clinic on Monday, a little more than an hour from Pforzheim.

It’s in the most beautiful location, just outside Heidelberg, in brilliant, old but meticulously kept buildings. We had to fill in a COVID19 tracker form, wear masks and keep our distance, apart from that it was business as usual for a busy and, in some cases life-saving, facility – complete with a helicopter pad.

The visit was very useful, if at times a bit sobering, and it prepared us for our next meeting tomorrow in Munich. We’ll leave in the morning, see the consultant in the early afternoon and then drive on to Burgau to see a neurologist and therapist on Tuesday. After that, it’ll be decision time.

It’s a busy time. Above all it’s a time packed with deep emotions and situations beyond stress. A friend once told me “you can only do what you can do”. At the time I though “how obvious is that?”.

It is a stark realisation that you can try and try and achieve a lot – those who keep trying get lucky – but that there are times when the world keeps spinning its own way.

You might have heard that the police was chasing a man in the Schwarzwald for five days because he had disarmed four police when they wanted to check him out for whatever reasons. They captured him eventually close to his local pub – not somewhere in the midst of the forest – with his hands in the air and the four guns he had taken from the police in front of him. Doesn’t sound like the dangerous “Schwarzwald Rambo” the media had hysterically reported about for nearly a week.

If you are old enough you will remember the great opening line of Patty Smith’s debut album: “Jesus died for somebody’s sins but not mine.” One of the best opening lines of any song ever. Not passing the buck. Taking responsibility. Full of life, action, and energy. Bring it on.  After the release of Horses, she sang it in 1976 on Saturday Night Live and, apparently, shocked the nation. Good. In 2014, Pope Francis who obviously has an immaculate taste for music, invited her to take part in festivities in the Auditorium Conciliazione just before Christmas. She must have rocked the Cathedral.

Jesus died, I think there isn’t much doubt about it, because he was human. He died the way he did because he upset the system quite a bit. There is an inevitability because of our human nature. In the meantime, we have to live our life and give it meaning, not taking too much direction, especially when it doesn’t make sense, but taking responsibility and affect change where change is needed. Someone during the week said that we should ask ourselves from time to time: What would the world be without me? Is it different because I am around?

In case you haven’t looked it up in the meantime:) – the comet NEOWISE you can see on the night skies these days was not discovered by a human, but by the “Near Earth Object Wide-field Infrared Survey Explorer”, or NEOWISE, launched by NASA in 2009.

What a week. Both, the one that just past and the one lying ahead.

I took dozens of pictures and as many videos of the arrival of nearly half a dozen of crates and as many men to take them off the truck and onto An Saol’s premises. The 500kg crates were nearly impossible to get off the truck, they had to be taken apart outside and then the parts moved one by one into the building, some of them around the building first, so we could get them through the doors. Not good if you have a weak stomach or a bad heart. Then nearly two days of assembling, three days of training and a mini Open Day for just over an hour to show a very small number of selected guests around the building and demonstrate the mind-blowing equipment. There were families there, some clients, representatives from different organisations, including the HSE, Headway Ireland, Roisín Shortall, our brilliant buildings project manager, staff etc.

What happened last week was the result of years of very hard work. It was a first in Ireland. It will, for the first time, allow us to offer dedicated Community Rehabilitation, supported by state-of-the-art robotic-aided gait training equipment. It was historic.

But it is this picture of Sara Walsh’s father that I like best.

We met Sara and her parents first in Beaumont. We learned from them what to look out for when you spend long periods in an acute hospital. Very sadly, Sara died later. When I was wondering whether to go ahead with An Saol or not, it was the very generous and completely unexpected donation from her family that took that decision away from me and made it clear that it had to go ahead.

So we decided to dedicate the Gait Training Area of An Saol’s Rehab Centre to the memory of Sara. Or better: to her presence. Because she is with us and will always be.

The biggest regret is that Pádraig could not be there with us. He is the driving force and inspiration behind An Saol. Not only did he come up with the name and the logo (initially for his Irish language podcast), but with the concept and the implementation. Every day, he is convincing medics, politicians, other families and society that there is ‘life and living with a severe acquired brain injury’.

A heart-felt “thank you” to everybody who contributed to this incredible achievement. Family, friends, supporters. This was a dedicated team effort that went on for years. No one on their own could have made this happen.

Later today, we’ll be driving back towards Pforzheim. We’ll get there tomorrow after a half-way overnight stop. Tuesday will be Pádraig’s first appointment with a consultant to assess his hip. Monday week, he’ll have another one and then we’ll know more. Both appointments are in different cities. It’ll be a busy 10 days or so ahead of us. But sure….

Greenpeace had built an arch that looked like a rainbow on the dike, just before the mile-long bridge to the Arche Noah begins: “Life After Corona”. They offered coloured sheets on which people could write their thoughts and stick them onto the rainbow.

We were on the way to the Arche and just made it, before it started lashing. We could sit outside, with a roof over our heads, and sat out the rain. In the meantime, we had Currywurst, Schnitzel and a Burger. Pádraig wanted a Coke, we had a glass of dry white wine. At least that’s what we ordered. What we got was white alright, but ‘lieblich’ more than ‘trocken’.

Why is any of this worth mentioning? – Because it is so completely normal, ‘stinknormal’. To go for a walk. To see other people and observe what they’re doing. To get wet from the rain. To run for shelter. To give out about the service. To be alife.

I have no idea whether there will be life as we know it after Corona, never mind what it will look like.

I find it hard to connect with people who worry about their mental health because they feel isolated these days. People who are bored out of their mind because they have to watch movies all the time, or read books, or go for long walks, or be with their family. People who cannot go to the cinema, to the pub, to the gym, to the hairdresser. What is their life like if they feel that this is hardship?

One of my older sisters, the younger of the two, died last week 20 years ago. I smoked a cigar for the first time in years because I wanted to take some time out and remember her. The cigar made me think of my father who had swapped cigarettes for cigars during the war because there was less demand for them and they were easier to come by. He always had one in one hand and puffed. My mother worried about her curtains going all yellow. Even the newspaper cuts my father sent me, no matter where I was, so that I kept abreast of what was happening in Dortmund, smelt of cigar smoke.

A lot, if not most, of the people who attended my sisters funeral are long dead. The paper my father sent me important cuts from, does no longer exist.

I listened to Carlos Puebla while I was smoking

Carlos says in the introduction that the first verse reflects what ‘our commander in chief’ said when he read Che’s letter of resignation.

The whole thing, the picture, the myth, the glorification, all that is a bit pathetic. Sure.

But the idea is all but, the idealism, the knowing what is right and wrong and to do something about it, the fight for justice, is all but.

After my previous life kinda ended, someone from that life told me that colleagues saw me as an idealist. As if they were bad mouthing me.

What’s wrong with being idealistic? – Would the Che have joined Greenpeace?

His friends left the room, packed with high-tech life support machines, when I arrived. He didn’t move and had a big white bandage around his head. Someone had written on it, with a thick black marker, “No Bone”.

Any chance of a misunderstanding I had hoped for so desperately disappeared in an instant. My body went into shock and I cried like never before.

That day sent all of us, especially Pádraig, on an incredible journey. What he has been experiencing is beyond imagination. With a huge impact not just on him, but also on everybody around him.

The world did not stop that day. But it started to change. it will take some time for us to fully realise the extend of the impact of that accident, for which nobody was ever prosecuted. What is certain, though, is that it was much much bigger than anybody could have anticipated that day.

That day, Pádraig started to open doors.

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It‘s seven years today that the phone rang just before I was going to bed in Sanya on Hainan Island in the South China Sea.

Together with a good friend, I had just won a fun quiz pool side competition, following a long day of a localisation conference to which a Chinese company had invited me. I had used ‘Skyfall’ as a metaphor to present my view about how I saw the field changing dramatically. Skyfall.

It took another few phone calls that night for us to start to react to what had happened earlier that day on Cape Cod.

I didn’t go to sleep that night, booked flights and a car for Boston Airport, and left the hotel to head for the airport at 5am.

The rest of the family made their arrangements on the other side of the world. We arrived in Hyannis within hours of each other.

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The following seven years have felt like several life times.

What happened that day nearly killed Pádraig many times, including occasions where one of his friends and then us were asked to consent to his death, to “allowing” him to die.

That decisions though is nobody’s but his. No decision about Pádraig without Pádraig. Especially if it is a life and death one.

We will leave Pforzheim this morning to drive up North. We‘ll be back in two week‘s time to see two (neuro) orthopedic specialists. Pádraig’s hip issue, we have learned here, cannot be resolved with therapy alone.

His journey, Life and Living, continues. Like yours. Like ours. In company. With Love.

Have you ever been in a pickle? – Do you know what “I’m in a pickle” means? I had to look it up when I heard it for the first time in an ad some weeks ago. I had to think about that expression this week for several reasons. Christopher McCandless story was in the news – making me think about our trip to Alaska. Making me think: they can take away the bus but they can’t take away our freedom. We were trying very hard to find an answer to Pádraig’s hip issue. And we were looking at ‘logistics’: our plans are changing around new doctors’ appointments.

Christopher McCandless was in a pickle when he ran out of food and couldn’t return from ‘Into the Wild’ in 1992. He lived in a Fairbanks Bus 142 for about four months in Alaska and sadly died there at just 24 years of age. Jon Krakauer wrote a book in 1996 and Sean Penn made a movie in 2007 about his life. Both are one of Pádraig’s favourites (and mine). Alexander Supertramp, his pseudonym, wrote a diary that inspired many, including Pádraig and one of his friends, to leave ‘stuff’ behind and concentrate on the essentials. Pádraig still has to go on that trip into the wild, to Alaska.

We’re working on it.

Last Thursday, Alaska state officials said the bus was removed by a heavy-lift Chinook Helicopter as part of a training mission “at no cost to the public or additional cost to the State”. (That must have brought a big sigh of relief to many.)

It was decided that the bus had become some kind of threat to public safety. Too many people, presumably unfamiliar with the territory, had ventured out to the bus and got not just ‘into the wild’ but also ‘into a pickle’. At least one other person died there.

I assume that the Alaska state authorities believe that people are now safer. I find it difficult to follow that argument. And really, removing that bus doesn’t make much of a difference.

If people want to get out and do it, they will just get out and do it. And they will be very very glad that they did. Nobody will be able to lock them up in their ‘safe’ civilised  regulated and standardised lives by removing a bus.

Talking about buses.

A friend of Pádraig’s recently bought a bus for herself. It’s even wheelchair accessible. Pádraig hasn’t asked her yet. But, maybe, one day he will. And, maybe, just maybe, she might give him a loan of it for a while.

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We went for a walk on Friday, up a very steep narrow road, to Pforzheim’s main cemetery. I’ve often thought that how people burry their dead says a lot about them. German cemeteries are like parks. Really well maintained parks. And the graves are like really well-maintained little gardens.

When I went with my mother to visit my father’s grave many years ago, she regularly said to me that she was afraid to die because of my, in her eyes, very little satisfactory approach to grave maintenance. She would really feel very uneasy thinking that I would’t look after her grave properly, as if it was a well-manicured very small version of a French garden. I am sure it wasn’t just that but the thought of one day being buried in an untidy grave really felt unsettling for her.

Here in Pforzheim part of the cemetery is a memorial for the more than 13,000 people who were killed in just one night, on 23 February 1945, when the city was fire-bombed for just a 22 minutes by the British Air Force for apparently no reason. – We discovered the monument some years ago and it’s a quiet, somber place perfect to reflect on life and how we cherish it – or don’t.

There is also a memorial to those who were killed by the nazis because they happened to have a disability. The memorial lists their names and ages, some of them as young as eight years old.

I took a video and when I looked at it again, I realised that you can just about see Pádraig’s reflection in it.

The memorial is incredibly moving in its simplicity: To remember and to commit (“Zum Gedenken und zur Verpflichtung”) and then quoting article 2 of Germany’s Constitution (basic law or “Grundgesetz”): “… everyone has the right to life and physical integrity” (… jeder hat das Recht auf Leben und körperliche Unversehrtheit).

I came across and added a screen capture of a tweet from last week showing how the President of the United States is campaigning for his re-election using a symbol the nazis used to identify political prisoners in concentration camps.

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During the week, there was a bit of a commotion in the centre. Someone had left a big big fruit basket for Pádraig with a really nice card.

Turned out that a family, friends of ours, had heard that Pádraig was in their neighbourhood and had sent him this really thoughtful and beautiful and nice tasting present. It lit up his (and our) whole week!

We also got a visit from my sister and husband which was really nice. We managed to go out and have a pizza in a lovely beer garden / open air pizza cocktail bar. All socially distanced and our names logged in with the restaurant, just in case… Being out, seeing other people in normal circumstances felt like a whole new experience.

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I put together a few pictures and videos of Pádraig to show how much in control he his of his body, how he can, being asked to do so, move his arms and legs – even the right leg which is compromised by his bad hip.

Moving his right arm.

Moving his left leg.

Moving his right leg.

We also rediscovered a way to help him holding his head in the lokomat which he is now using for the full scheduled 45 minutes every day.

After many conversations and advice from different people, including several good friends and specialists in Dublin, we made two appointments with specialist surgeons here in the South of Germany to assess and possibly address Pádraig’s hip problem. We discovered that there is a field called ‘neuro-orthopaedics’ where surgeons have experience not only with orthopaedics but also underlying or connected neurological issues. If Pádraig needed a surgical intervention, even his anaesthetic would be complicated. There are not many patients like Pádraig and few surgeons would have the necessary experience to treat him. We want to feel comfortable that the doctors and their team have the necessary experience and knowledge.

It means our plans will have to change and that we will have to figure out a few details. But we’re well used to that.

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What happened to Pádraig’s hip is not unusual and is, to our surprise, a pretty well-known development in cases like Pádraig – of which, it has to be acknowledged,  there aren’t that many.  I do not remember that anyone responsible we asked over the past year and a half or so explained to us what was going on. Never mind initiated an appropriate treatment plan for him. E-mails and enquiries remained unanswered, referrals did not materialise, solutions offered remained at the level of a 45 minutes demo session of stretches for Pádraig aimed at carers.

I might be completely wrong but I think many do not see Pádraig walking again ever. Even if walking is the best therapy to prevent many of the secondary injuries or illnesses – such as that with his hip.

A bit like the approach to his catheter, his tracheostomy, his PEG, his eating and drinking, travelling and reading.

Nothing with Pádraig without Pádraig. He wants to be here. He wants to take on any problems and try to address them. Today, when we asked him what he was thinking – was he thinking about his hip, did he feel any pain – it turned out that he was listening to a song on the radio about hope.

It seems that the rehabilitation of those with a severe Acquired Brain Injury has to be driven by their family who share their hope.

Hope that is not desperation. Hope that you need when you are in a pickle. Hope that gives me the strength to keep going. Hope that gets us out and do it. And I am sure that we will be very very happy that we did.

There is a gorgeous view of the Black Forest, the “Schwarzwald”, from the balcony of the therapy centre in Pforzheim. Sitting here on a good day can make you forget your troubles.
When you talk to people here, many will tell you that what they most like about the place is that people are motivated and engaged and ambitious.

They have not given up on themselves and they don’t feel that others have given up on them.

Some have brain injuries, more have spinal injuries. All of their lives have changed forever since their illness or accident. But they all believe that if they keep trying their life will become better.

Sounds pretty ordinary, doesn’t it? Everybody’s life changes all the time. Plans don’t (always) work out, (some) dreams seem to disappear in thin air and God is laughing his head off watching us humans wondering where it all went wrong.

But most humans would agree that things, life, will get better if they keep trying. Practice living. It helps.

Only that the challenges people here are facing are a bit tougher than average.

Everybody here has heard doctors, nurses and therapists telling them that they should ‘face the facts’ and accept their life ‘as is’. Some have been told their lives are basically over. I know at least one person who has been told he’d be better off dead.

That would be true if life wasn’t worth trying.

People here are 100% convinced that life is worth trying. They have not given up. And it shouldn’t come as a surprise that because they are trying, very hard, they are making progress in their recovery. Most importantly, they live their lives. They have disappointments and they have successes. They are sad, at times, and they are happy, at times. They are bored and they’re having fun.

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We’re still trying to figure out how best to approach the problem with Pádraig’s hip. Good friends are helping and we hope to get a better picture over the coming week.

In the meantime, one of the therapists here gave us a loan of a ‘handshoe’ mouse for the weekend for Pádraig to try it out. It’s a mouse that fits his hand like a glove. While Pádraig finds it difficult to move his hand with the mouse, it was no bother for him to click the right mouse button with his index and the left mouse button with his middle finger of his left hand. Once, twice, or many times. Very controlled. – Here is a very short demo of how he does it.

 

Isn’t it absolutely amazing?

We knew he could control the movements of his fingers, especially of his left hand. But it was the ‘handshoe’ mouse that provided the support for his hand. We’ll have to figure out how. But I know that being able to use two buttons will allow Pádraig to control a computer, to drive a wheelchair, and to do many more wonderful things.

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Yesterday, Pádraig’s Kia did not start and I got a jump start from a fellow patient in a wheelchair who got down to his car, drove up to the Kia, opened up the flap under the passenger seat to access his car’s battery and helped me to get the Kia started.

In between he told me that he didn’t even think about the truck driver anymore who had knocked him off his bicycle and abandoned him on the roadside for dead. He was focusing on enjoying his life as much as possible.

When he left he said that he was really happy for having been able to help me.

What an example to follow.

He didn’t get there on his own. He had people around him he could trust. People who believed 100% that his life, like their own, was worth living. People who kept trying. Like himself.

Pádriag is living his life. He has never given up. His believe in life inspires me and his trust humbles me.

It’s hard to know these days who you can trust. Definitely not the banks, probably not the builders, there are serious doubts around the politicians, the church, the police and the justice system. ‘Trust me, I’m a doctor” is a good song but questionable as a statement.

By contrast, I’d fully trust the man in the wheelchair who helped me start Pádraig’s car. I trust Pádriag with my life. Is it because they haven’t promised me anything? Because they keep trying in the face of terrible adversary?

“Someone press the reset button on the world”, I read yesterday. Would that be an option? – Giving up most definitely isn’t.

Pádraig could click that reset button. With his index or his middle finger.