Silence

"Jeder hat das Recht auf Leben und körperliche Unversehrtheit."

(Grundgesetz, Artikel 2)

"Everyone has the right to life and physical integrity."

(Basic Law, Article 2)

It doesn’t happen that often anymore, but today I cried — for quite a while — as we were walking through Pforzheim’s cemetery. Nothing special, that’s what most people do when they are alive and in a cemetery, you’ll think. But this was special.

It was like a walk through my fatherlands’s history. And my present. At a level I had never expected.

It had rained all morning and we only went out when there was a break in the clouds and we were getting desperate for a breath of fresh air. Everything in Pforzheim is either up a hill or down a hill (and then up on the way home). We opted to go up the hill first and entered Pforzheim’s main cemetery. Many seasoned travellers will tell you that if you want to get to know a country, see how its people bury their dead.

First impression: this place is at least as beautiful as Dublin’s Botanic Gardens. Unbelievable. It took a few steps into the place for us to start our journey through history. There were monuments erected by the Butcher’s Association, and a few steps down one lane another by the Bakers’ Association remembering their dead during World War II, and especially those who had died in Pforzheim on 23 February 1945. There was a Jewish plot for those people of Pforzheim whose graves had been destroyed in the late 1930s by the Nazis.

Then we saw this gigantic cross behind the trees overlooking a huge field. This must be where those who lost their lives as soldiers during the world wars must be buried, I thought. And that is exactly what it looked like until we saw this date again: 23 February 1945. I jumped down the wall into the field with a huge number of small grave stones, each showing the names of dozens of people. And then, looking back up towards the huge cross, it said:

Den siebzehntausend Opfern des 23 Februar 1945.
In Memory of the seventeen thousand victims of 23 February 1945.

This is what wikipedia says about the attack:

“One of the most devastating area bombardments of the war was carried out by the Royal Air Force (RAF) on the evening of February 23, 1945. As many as 17,600 people, representing 31.4% of the town’s population, were killed in the air raid. About 83% of the town’s buildings were destroyed, two-thirds of the complete area of Pforzheim and between 80 and 100% of the inner city.”

The attack lasted for just 22 minutes.

I walked around the field with all those gravestones. At the end, there was a white wall with three bronze plaques. And what I read there, was what made me physically almost disintegrate.

The plaques remembered (“In Memoriam and Commitment”) the old, disabled and sick people, and listed their names, who had been killed by the Nazis.

The last sentence on the last plaque read:

Everybody has the right to life and physical integrity. (Basic Law. Article 2)

A statement to show that the Germans have learned from history. (This is also what a German judge told us during a formal hearing at Pádraig’s bedside in a Hamburg hospital – and the reason why doctors are *never* allowed to treat people without their consent or that of their appointed guardians, usually family members.)

There is scientific evidence suggesting that 60% of those diagnosed as being in a permanent vegetative state in Ireland are, in fact, conscious. There is very strong scientific evidence suggesting that once someone is in, even, a minimally conscious state it is almost impossible to predict to which level they will recover. There is overwhelming scientific evidence suggesting that the only proven approach to recovery is intensive physical and mental exercise. Scientific research has produced lists as long as my arm with diseases and illnesses caused by ‘just’ lying in bed and lack of exercise. A lot of them ultimately causing the death of the person in question. Most of them causing untold mental and physical suffering. Untold because most of these incredibly vulnerable people we are talking about are non-verbal and cannot speak up to defend themselves.

What is the difference between actively killing someone who has a very severe disability and abandoning them in a bed in a nursing home (or their own home) without the appropriate support? Cost? Time? Suffering?

We know what needs to be done. The Irish health system knows what needs to be done. It has agreed, in late 2016, to take one first very small step and support the An Saol Foundation’s pilot project. It has taken more than a year to sign a service agreement. More than four months have passed since I signed this service agreement.

And what has followed since is: silence.

None of this is easy or straight forward. Comparisons never hold. But this silence today during our walk, these monuments, the experience of the silence we have experienced, deeply touched me. Very deeply. In many cases it is the deafening silence from those who know that makes atrocities, injustice, crimes and human rights violations possible. Our case is just one of many. But it is ours and, whatever happens, we will take care of it. Never again. In Memoriam and Commitment.

Radical

There are three hugely challenging situations for live commentators: the visit of the Pope (when people are gathering and waiting for his appearance); cricket matches (nothing happens for days); and the run up to royal weddings (when they have to pull out all the stops for an essentially mundane affair). Live broadcast of that weeding in Windsor today started in Germany at 11am on (almost) all channels. And there were hours to be covered with live commentary when nothing whatsoever was happening, apart from people piling up in front of Windsor Castle and celebrities walking towards the venue. The most unimportant ‘facts‘ became a headline, like the letter Meghan had written at the tender age of 11 to the then First Lady, Hillary Clinton, to complain about a sexist TV advert. I switched off before they had a chance to discuss what it meant that she is Shakespeare’s fifth cousin 13 times removed, and a close relative of Churchill, his sixth cousin five times removed.

The world has gone mad. Definitely.

After our slow, late, and leisurely breakfast, Pádraig had a go on the MOTOMed (again at 60+ rounds per minute beating all his previous PBs), followed by lunch and then a trip to the shops. We can borrow a wheelchair-enabled car here which gives us a bit of mobility. It was hell. First, Google sent us up the hill on a road that couldn’t have been narrower and bumpier passing by each and every one of Pforzheim’s “Schrebergarten”, plots rented by the good people of Pforzheim to plant their own fruit and vegetables. Then, there was no parking and not even an entrance to be seen for Media Markt. When we made it to the alternative Saturn superstore, it was packed with people who had decided to buy supplies to keep them going for two days of closed shops. We didn’t even all get into the shop and decided to head home, passing by a real German ALDI where we discovered a machine that was dispensing bread the same way machines have been dispensing packets of cigarettes for decades. That way, you can be sure that the bread you’re getting hasn’t been handled by a dozen other customers before you put it into your shopping basked.

I am thinking about how to kick-start the Day Centre for people with very severe acquired brain injuries in Ireland upon our return, with or without the money from the HSE. Some interesting stuff came up, for example: if we had the funding allocated to two families for intensive home care, we could employ three therapists (at German rates) and three carers, and rent basic premises. If we had access to the funding of more families, we could add transport, robotic walking equipment, transport and additional staff (co-ordinators, drivers, kitchen staff, more therapists etc.). Currently, we don’t have access to that funding, but in my mind, there will come a time when we will have to claim it with the support of as many families as possible.

In a very radical way, if needs be.

Conservative

This morning on the news they asked young people if they knew why they’ll have this coming Monday off. Most didn’t have a clue. Some knew that it was Pfingsten, or Pentecost, but most of those who knew didn’t know what ‘Pfingsten’ was all about. Germany keeps its christian holidays – nobody would dream of introducing ‘bank’ holidays, or moving christian feasts like ascension or corpus christi from Thursdays to Sundays (as Ireland did some years ago). Nobody would dream about going shopping or demanding that stores should be open on Sundays. There are large companies whose policy is not to send emails no weekends – doing so would be considered harassment.

10-12 years ago an auctioneer we were friendly with told us about his Irish estate agency’s problems with the German auctioneering business they had just bought out. These Germans, he said, will never get anywhere with their ultra-conservative, never-changing, antiquated approach to business. For him, the proof was that Ireland was booming, while Germany’s economy was growing in low single-digit figures – completely unexciting.

It only took a year and he had lost his job. And the German banks were bailing out Ireland, charging punishing interests rates.

What all of this tells me is that we all need time off from work, at the same time and with businesses and shops closed – and who cares whether the reason for this at some stage was Christian (and for some people still is). And: business has to be done in a socially responsible, controlled, and regulated way – otherwise it’s reckless and will lead to disaster. Cashing in the quick buck, betting on short-term gains, an I-don’t-care-what-happens-after-I’ve-cashed-in-my-fortune attitude creates havoc.

Thinking and planning from just one election to the next, in four year-cycles (if you’re lucky) doesn’t work. Blaming predecessors for chaos shouldn’t be allowed. Solving individual problems on-the-spot through the intervention of Ministers or, more likely, Primetime, will remove ‘trouble-makers’ from the public airwaves for a while, but will not help to solve the underlying structural problem and will not address the systemic failures of the systems.

Patrick started a slightly different routine during his physio around the middle of the week. And for all of these exercises, he is standing, supported, if needed, by therapists and myself. The amazing aspect of this is that we all feel that while he still requires support, he is doing more and more himself. He is back walking and it just took two people (myself at his back and another person in the front) to help him walk the full length of the room.

We’ll have three days off after today – three days we will, I am sure, readily enjoy; three days that will help us rest and prepare ourselves for another week of a really intensive, really demanding, pushing to the limits, exciting exercise regime.

Emphasis

There was Pádraig today with his two eyes wide open smiling at his SLT today who had used ice-sticks to stimulate his nerves and muscles around his eyes and mouth. Ice sticks. When googles this I found out that there are many celebrities who are using ice therapy for beauty treatment as well – not that Pádraig needed it:)

I talked to a few people about shifting emphasis from care (the very early days) to therapy (2nd phase focus) to living a life (3rd and ongoing). Incredibly, all agreed that there is a point when living a life has to become the central focus of all efforts. It doesn’t mean that care and therapy become obsolete. What it means is that they should not become, or stay, at the centre of it all.

If there hadn’t been a strike on the French railways, we would have been sleeping on the train to Lourdes tonight. Instead, our thoughts are with our friends who are making their way to Lourdes this year, by other means.

Enthusiasm

Life is too short to be small. Meaning that if we want to make a difference or even if we want to enjoy life – we have to do it big. That’s the message. Not to “Just do it!”, but to really pull out all the stops. To invest all your creativity, all of your passion, all your conviction into that one thing.

A few days ago someone told me about their life as a manager with McDonald’s. About the excitement of planning and executing the opening of new ‘restaurants’. About planning staff and supplies with such details that they could cover peaks and troughs in less than hourly intervals. About being involved in this work so much that they worked day and night. That they didn’t even sleep for days on end if something had to be finished. Such was the dedication. To McDonalds.

If someone does this for Mc Donalds, I mean, seriously, how is it that it’s taking us years to get our Day Centre off the ground? That is just beyond believe! Maybe we should just pretend to develop a new Mc Donalds and then, at the last minute, swap the red and yellow sign for the An Saol logo? Maybe we are looking and waiting for certainty when there isn’t and will never be? Maybe we just have to take a risk and do what needs to be done because it needs to be done? Would doing it that way be reckless? Or just determined?

Pádraig changed therapists today. He is now again with the physio he had in previous years and with an SLT standing in for their colleague who will be away on leave for a bit more than a week. It’s great to see the different approaches they are taking. To learn from what they are doing. To reflect on what is achievable during the time we’ll be here and beyond.

With all the enthusiasm we have for making this place a better place to live in. For all of us.

Inside

Pádraig is doing great work. Here is an example. It looks like something he has done before: pushing and pulling an object away and towards him. In this case a small step stool.

 

What is different here is that he is standing, not in his standing bed or a standing frame, but by himself and supported by therapists and myself. That difference is humongous. He has to keep his balance, check that his legs are in the right position and keep his upper body and hips in balance.

There was a time when what I wrote was what I was feeling, what was happening, what I was thinking. I didn’t think twice about it. I was living a life dominated by existential threats: practically loosing my home (for several years) from one day to the next when we went to Hamburg; seeing my family split up between countries; struggling to keep my job; and above all, a constant threat to Pádraig’s life.

Almost five years later, Pádraig’s health is relatively stable and improving (with constant uncertainties lurking in the background); going back to my work was made practically impossible; we are still travelling between countries; there has been another health scare in the family; relationships, emotions, energy levels, hopes, my positive outlook – all that and much more is constantly being tested; at the same time, all that gives me the strength to get me through difficult days and moments.

Over time, I have changed and changed what I am writing about. There have been threats, comments, requests, or just views passed on to me nearly breaking my spirits. There has also been incredible encouragement and support. But I know that what I am writing is not as raw as it was, is a variation of reality, is lacking the despair, the passion, the fury, the ‘I’m beaten’-taste, the aggression, and the depression of my life. It’s sanitised, cleaned up, covered.

1-2-3

I once worked for a company that made its fortunes on a product called 1-2-3. It was that easy to use. That was their message.

Here is my 1-2-3.

(1) Persons with severe acquired brain injury have been abandoned by the Irish health system – with dire consequences for them and their families. I could go on and on and on about what these ‘dire consequences’ are, from mental health, to physical health, to financial and relationship issues, and I am sure many of you could add to this list yourselves. This is a, largely untold, scandal.

(2) The Irish health system, represented by the HSE, is not capable of providing the support these persons require – and, I would say, are entitled to in accordance with their human rights. This is despite the Minister of Health and the HSE publicly stating that they would provide this help, at least in terms of the provision of funding for a three year pilot project aimed at connecting what research into neuro rehab for severely brain injured persons has been telling us for years with the reality of neuro rehab. This is, sadly, not surprising, given the dysfunctional state of the HSE. And there is not much we can do about that.

(3) We need to offer an alternative to the offering by the health system and demonstrate how neuro rehab can be brought into line with recognised standards of care and the human rights of those affected. Rather than continuing to write begging letters to the HSE to please honour their commitments; rather than wasting time trying to comply with their requirements which are largely an exercise in ticking boxes anyways and an attempt to protect themselves;  rather than draining energies and becoming depressed because of a lack of progress. I will start writing and implementing a plan that will allow us to deliver much of the services that are needed. Starting tomorrow. And to be implemented before the end of the year.

Couldn’t be easier.

And. I could not even contemplate what failure would mean.

Neuenbürg

It’s Mother’s Day today in Germany, just a few days after what used to be called Father’s Day but is now called Men’s Day (Männertag). There was no breakfast in bed and there were no flowers, but we decided to celebrate the day by joining the good people of Neuenbürg for their annual open air street festival. Neuenbürg is just about a quarter of an hour South West of Pforzheim, by car which we borrowed from the centre.

As it happened, it was the first really miserable day since we arrived here. We felt with the people of Neuenbürg because the festival was – while not a complete wash-out – let’s just say: pretty quiet. There were tons of food and general store-type stalls in the streets, some of them selling stuff I hadn’t seen in years, like a woven ‘carpet beater’ (Teppichklopfer), a witch-type broom, or real authentic handkerchiefs (yes, the ones you wash, dry, and iron after use:), and there was also stuff I had never seen in my life, such as the original ‘sock hanger’ (“never loose the matching sock”), or a round-shaped plug brush (“Steckdosenbürste”) that should, of course, be on hand in every well-stocked kitchen. All this under the May Tree, the “Maibaum”, and right beside the food stall selling, just today, German Asparagus. Not Polish, not Hungarian or Italian or Spanish, no – but German asparagus!

We bought some of those weird-shaped brushes and had a portion of Maultaschen, the local variety of super-sized ravioli before we went back to the car, put the heating on to full power and drove slowly back over pothole-covered roads to Pforzheim.

No Eurovision Party tonight. No excuse to stay up into the small hours. Instead: geating into bed early to be ready at the crack of dawn for week 2.

Crazy

I bet we’re all watching the same show tonight, the world’s biggest song contest, the Eurovision! Right? It was so funny when I asked the (pretty young, relatively:) therapists yesterday where their Eurovision party would take place — Eurovision… mmhhh, they had heard their parents talk about that…

We’re about half way through the contest and, as an old (I should rather say: long-time:) follower of the contest, I’m really impressed. More countries than ever are singing in their own language – except for the Germans who got Ed Sheeran’s brother to help them out with a song about his dead father. As a country that survived two world wars (caused by themselves!) they will survive, it that should happen, another last place and be back with a vengeance next year. As one of the largest net contributors to the contest, they don’t have to pass through the preliminaries but go straight to the finals…

We all had our lie in this morning, a long, relaxed breakfast and, instead of lunch, a big ice-cream in town, and snacks on our tiny but very romantic balcony overlooking the neighbours’ balconies. This is, after all, Pforzheim’s north side, known for its international, a bit run down, and very working class neighbourhood.

Pádraig had a day off today too, except for a spin on the MOTOMed where he managed to get a new personal best, a PB, with more than 52 rounds per minute.

Not sure whether I will make it to the end of the contest or even the voting. Jessica Mauboy is just singing for Australia (yes, AUSTRALIA, *not* Austria) in this Eurovision Song Contest and I’m not sure whether I’m starting to see sings. Just a few minutes ago someone seemed to have taken away the microphone from SuRie (Annie Lennox’ sister) singing for the United Kingdom. I’ll go to bed and have sweet dreams before stuff gets too crazy for me.

I’ll find out who won tomorrow:)

LieIn

The first week in Pforzheim is over and I’m exhausted.

This is the routine: I’m getting up at 6am and get myself and Pádraig ready. We go over to have breakfast in the main building, a 5-10 min walk, taking into account the lifts and road crossings involved. We have breakfast there. Then therapy, three hours of physio, starting at 8am. There’s one lead therapist, an intern and myself. We follow a programme involving stretches, standing exercises and walking. At 11am Pádraig has an hour of SLT. The programme finishes with an hour in the robotic walking machine, the Lokomat. We make lunch usually for 1.30pm, just before the kitchen closes. Back at the apartment at 2.30/3pm. We take an hour or two of a rest and go out for 2-3 hours, either just for a walk or to go shopping. While we had dinner in the centre for the first few days, we’ve started to have it in the apartment – being able to choose what to eat is more attractive than German-style Abendbrot. Padraig goes to sleep at around 9pm, leaving an hour or two to chill. Before I go to bed, I turn Pádraig; and then again at around 2 or 3am.

Tomorrow morning, we’ll all have a well-deserved lie in.