I would like an abundance of peace. I would like full vessels of charity. I would like rich treasures of mercy. I would like cheerfulness to preside over all.
St. Brigid of Kildare (451 – 523)
If you make it to the top to the Half Dome at the eastern end of Yosemite Valley in the Yosemite National Park, California, you have every reason to be cheerful. Not many people make it there and it must truly be one of the natural wonders of the world. A day to remember for the rest of your life. Especially, if you made it up there in the company of good friends.
I had reason to be cheerful last week because I ‘run’ the first race in the past two years.
Before you ask: I wasn’t interested in the finishing time, I just wanted to be back in the company of great people and finish those 5 miles or 8 kilometres. I did, got a medal, and even had a bit of a family support crew. It made my week.
There was another session that really made me cheerful and happy.
Pádraig continued his Morse-Practice spelling letters and words – like Ro-taaaaa-tion, or *-*, for “R”.
This time, there was a would-be therapy dog observing the action, trying to figure out the connection between Pádraig’s foot movement that lifted up his knee and created that sound.
What a wonderful world.
Last week was the first day of February, St. Brigid’s Day – the day when people all over the country get their blessed Brigid’s Cross made of rushes and hang it over the door to protect their houses from evil and fire.
Just to provide you with a bit of help in case you encountered one of those days when cheerfulness didn’t preside over abundance of peace, full vessels of charity, and rich treasures of mercy.
Last week marked the anniversary of the liberation of Auschwitz by the Red Army. Holocaust-survivors spoke in the German parliament and after 77 year were still so moved they could not contain their emotions. The horror they had experienced never left them and the memories are just too terrible.
Today is the 50th anniversary of Bloody Sunday, when British soldiers shot 31 unarmed civilians who had gathered for a civil rights march through the Derry’s Bogside to protest against discrimination against Catholics in housing and employment. Troops from the Parachute Regiment fired more than 100 times, killing 13 people. After two inquiries and an apology from a British prime minister, no one has been prosecuted.
Is that the best of all possible worlds?
There are reasons to think that the world is a pretty difficult and challenging place for Pádraig too. Being hit by a car, with no-one ever been prosecuted, having to fight not just for your life right after the accident, but also for the right to live your life with the injuries you sustained, is tough.
It makes me think that the world could be better if we just tried a little bit harder.
But I also started to think that the world is quite an ok place, maybe even the best we can possibly get.
Sometimes, taking a deep breath helps.
Pádraig still goes to Hyperbaric twice a week. He says it helps him with his lungs and his alertness. I spend the hour with him, hoping against hope that there is some truth in what they say, that oxygen helps you stay younger.
As the weather is getting slightly better and the days slightly longer, Pádraig is also back out on more frequent walks. Yesterday, in the Botanic Gardens.
There isn’t much we can do to change circumstances. There is nothing we can do to change the past. No matter how horrendous it was.
What we can do is seeing the good things and the good people around us, and being grateful for them.
Congratulations to the wonderful world we live in. Thank you to the generous, caring people who are all around us.
Two things are infinite: the universe and human stupidity. But I’m not quite sure about the universe yet.
Albert Einstein
Albert Einstein has a few of these funny quotes where he positions himself as the smart guy and most of the rest of us as the stupid ones. In a funny twist of things, I’d say that most of us would actually rather see ourselves as being on Einstein’s side, the smart side. And most of the rest of the humans on the other side. Which by itself, you could say, might be proof of our stupidity.
All this came to my mind when I listened to a documentary about Angela Merkel during the week. She was born in Hamburg and lived there until her family moved to the ‘Russian Zone’. The driver of the van moving their furniture to their new home reportedly said that he only knew two types of people who moved from West to East Germany: Communists, and other idiots.
Somebody once asked Frau Merkel why she liked and studied science and maths. Her answer was that because she could be sure that, even in the Eastern part of Germany, 2 + 2 equalled 4 – at least when she had done the calculations.
We are living in an age, when it is often difficult to figure out what is right and what is wrong. What is fake and what is authentic. 2 + 2 does no longer necessarily equal 4. Independent of the political system we are living in. Independent of the level of intelligence of the people around us.
Could you see anybody coming up, in a credible way, with lines like:
And I would do anything for love, I’d run right into hell and back I would do anything for love, I’ll never lie to you and that’s a fact.
Being smart or being stupid is no longer as important as it was in 1951 when that famous picture of Einstein was taken or when he made that remark.
We have all been let down by smart people we trusted who told us lies, who didn’t tell us the truth, including prime ministers, a pope, bankers, judges, and doctors. And many of us have been pulled out of sinking boats and towering infernos by ordinary people who would be considered ‘stupid’ by the smart, rich, famous and privileged.
Pádraig had a good week. He slept well almost every night. He is content in himself. He had loads of exercise and fun, including a ‘dog day’ in An Saol, with three dogs providing tons of action.
We have started to plan life without COVID restrictions hoping that they will come to an end, that soon people can meet up with each other again, go out with each other, and more actively share their life with their friends.
Pádraig can’t wait to get out again with friends. Stay in again with friends. Travel again with friends.
There are people who will help us making our dreams come true. We’d better believe it. As least as long as the stars are burning.
As long as the planets are turning, As long as the stars are burning, As long as your dreams are coming true, You better believe it.
If we believe that, we are smarter than Einstein. It’s not human stupidity, it’s love that is as infinite as the universe. We are the people who’d do anything for love. (And we won’t do that.)
My policy on cake is pro having it and pro eating it.
Boris Johnson
In other words, have your cake and eat it.
The little girl on the right in the picture above was just told that she could not have the cake and eat it. It’s either or. A life lesson kids, generally, learn early in life, certainly before their 57th birthday. (You also cannot have a lockdown and wild booze parties. Or participate in an election and not accept the results.)
We celebrated a birthday in the family last week with Pádraig enjoying the celebrations, and the cake. Birth-day stories, in addition to the cake, are one constant with birthday celebrations, probably not just in our family. I have a set of them for these annual occasions. The joy, the fear, the relief of that day. Now many years ago. Everybody, generously, just takes a deep breath when I tell them, again. And again. Every year.
It’s all pretty predictable. A given.
Or is it? – Not really.
I am so grateful that we can all be together. That I can tell my stories. That everybody is in a generous mood. Having a good time. Eating the birthday cake. Blowing out the candles.
Last week was the week a young school teacher was killed while jogging in the afternoon along the canal in Tullamore. Vigils were held all over Ireland, in England, Australia and the USA to remember her, to show solidarity with the family, and to send out a strong message to the world: no more attacks, no more deaths, no more tolerance for a culture where this would be in any way acceptable.
Pádraig came across a place where one of these vigils were held, yesterday afternoon when he went for a walk. Many people say that Aishling’s murder is one of these watershed moments that will change our culture. Let’s hope it does.
Being together is not a given. Nor is being able to blow out the candles on a birthday cake. Not even being able to eat and enjoy the cake is a given.
I am pro being together and pro enjoying the cake. Pro being there for each other and pro having a good time. Pro finding a purpose in life.
And pro changing the culture of abuse, neglect, targeting, letting die, killing, and looking the other way.
It is us, you and me, who will have to change this culture. Nobody will do it for us.
Eating is not merely a material pleasure. Eating well gives a spectacular joy to life and contributes immensely to goodwill and happy companionship. It is of great importance to the morale.
Elsa Schiaparelli
It’s your turn, they said to me. Thirty eyes were looking at me in expectation and with excitement waiting for me to present my party piece. I had just learned what a party piece is and was still in awe at what my friends, sitting around in a circle in the deep Donegal Gaeltacht, had just presented. Poems, songs, a dance.
My mind went blank. I couldn’t think of my mother’s name, never mind a potential party piece.
My Gaeltacht friends were kind people. They were not going to let me sweat it out. Realising that I was in a bit of a pinch, they helped me out with the only German song they all knew because an RTÉ presenter had been playing it for a while every morning as his signature tune. Erika. It’s a catchy tune alright, tough it comes with a ‘health warning’ on youtube for a reason.
While I was really grateful for the generosity of my friends for giving me a dig out, I was also slightly embarrassed. For several reasons.
I now have a party piece. Though I haven’t had an opportunity to showcase it for a long time.
It’s not a song but the idea is the same. Getting together with family and, unfortunately these days with very few if any, friends. And contributing something.
Last week, we had a few things to remember. Eight years ago, Pádraig’s tracheostomy was removed before being discharged from hospital. We spent two weeks with him in hospital, where they had removed not just the tracheostomy but also all the monitors he had been attached to up to then. The doctors in his ‘main’ hospital had told us that even an attempt or trial removal would be too dangerous. That he could choke and die, in the worst case.
Last week, he shared the paella with us. My party piece.
One thing only I know, and that is that I know nothing.
Socrates
They should take their lead from the founder of Western philosophy and admit to know nothing.
Who?
Take your pick: investment experts giving advice on what to do with our money; employment experts telling us how to find the best job; contagious disease experts talking about COVID. Or politicians talking about anything.
If you are constantly learning, searching, wondering, you are in good company.
Being together at home for Christmas, in good company, was magic.
In 2013/14, we went to the Atlantic in Hamburg to mark the special day. One year we met Udo Lindenberg. He lives there. When he went up in the lift with us, I thought about the story Leonard Cohen told in one of his concerts about Janis Joplin joining him, by chance, in the lift of the Chelsea Hotel.
“I said to her, ‘Are you looking for someone?’ She said ‘Yes, I’m looking for Kris Kristofferson.’” It was obvious that Cohen was not the large, gruffly handsome songwriter, but he made a play anyway. “I said, ‘Little lady, you’re in luck, I am Kris Kristofferson.’ Those were generous times. Even though she knew that I was someone shorter than Kris Kristofferson, she never let on. Great generosity prevailed in those doom decades.”
Not quite the same story and company. Udo didn’t say much to us. And instead of being cool, I was slightly star struck. But good company, nonetheless.
I had googled Hamburg’s nicest walk: a stroll of us along the beach. In Hamburg, it turned out that it was an artificial strip of sand along the Elbe river, opposite one of Europe’s largest harbours – giving a German like myself that sense of the wide open, a sense most definitely not shared by my Irish family. They reminded me that no one, ever, would take a stroll along the docks of Dublin harbour. Even Udo couldn’t make up for that miserable walk, they said. Udo wasn’t to them what he was to me anyway.
In those years, Pádraig was in hospital over Christmas. No way to get him out to join us for Christmas, for all of us together. Those were days of great uncertainty. Any day could be one bringing the most tremendous fear for his life. Anything could and did happen.
Of course, anything can still happen, any day and any moment. But the immediate fear has receded and given space to the daily struggles.
This year’s highlight was trying out the Super Slicer. It cut our fingers within just minutes of each other. It does what it says on the box. Deep cuts and blood on the floor. The cuts will heal in a few days and the blood is long gone.
I like the Far Out t-shirt. It makes me think of Alaska 2022.
One of Pádraig’s friends told me that it took him two years to get rid of all non-essential stuff he had. My New Year resolution for this and the coming year is to try that myself.
Will I feel lighter?
I recently came across a quote by Thomas Mann (The Magic Mountain) –
“Tolerance becomes a crime when applied to evil.”
… and was thinking whether this is something to take into account, take very seriously in this new year. Become crime fighters when we see evil, even when it is passive, caused by indifference rather than actively doing harm?
I was also thinking that it often seems that it takes a tragedy to bring out the good in people.
That does not make them less devastating or traumatic. It does not make them something we’d be ever calling for. But would that mean that even tragedies have a purpose? May lead to some good?
The statement that the Word, or Λόγος, reason and knowledge, for some representing God, was at the beginning, has always meant a lot to me. It is an enormously powerful statement that expresses deep faith in the world we live in. If this world is rooted in Λόγος, it cannot be all that bad.
There is a reason to wish each other a Happy Christmas. There is a reason to be hopeful that all will turn out well, even if, at times, life seems to be everything but.
Last Friday, The Irish Times published in its Magazine The year in pictures, documenting some of the most important moments of the past twelve month.
The paper decided that one of these was the opening of An Saol and people getting access to rehabilitation that they had been deprived of up to now. They showed a picture of Pádraig, myself and Barry working with the Lokomat.
It is a brilliant picture and a great recognition of the work we have all been doing over the past twelve months.
Christmas is when it’s darkest.
It is the Word that gives us the light to find our way out of the darkness.
The ‘leaves’ of the Christmas tree are faithful because they don’t shed. They stay with us all year round.
As do the apples that used to be hung on that tree.
Traditions change. St Nikolaus becomes Santa in the red coat. The ‘fir’ tree that preserved its colour and hope for growth and warmth even over the cold and dark winter months became the Christmas tree. And the apples became shiny glass balls in all sorts of colours. The ones that resemble the original apples are nearly gone.
The traditional song ‘Ach Tannenbaum’ became one of the most recognisable carols ‘O Tannenbaum’.
Next Tuesday is going to be the Winter Solstice marking the end of the long, dark nights and the beginning of the longer, more brighter days.
The message is very similar to that of Christmas which marks a new beginning with better days to come.
I’m listening to Us and Them. For the first time in decades. After all we’re only ordinary men.
Last week, an old acquaintance rang and we talked for a while. During that conversation, he reminded me of a quote by Arthur Schopenhauer:
All truth passes through three stages. First, it is ridiculed. Second, it is violently opposed. Third, it is accepted as being self-evident.
With some luck, we passed through the first two stages. Will the truth that even a person with a very severe brain injury has a right to live a happy life become self-evident in the New Year?
Traditions change. People learn. Days will soon be getting longer.
There are brighter days to come.
PS: A good friend reminded me that 2021 was the 50th anniversary of David Bowie’s game changing album Hunky Dory.
The title song of that album was Changes. Surely, a sign of things to come.
However careful we are, and however slim the odds, a severe brain injury is something that can happen to anyone, and any family, at any time.
Pádraig, Reinhard and Pat
Well now. No Risk No Fun? Is that not a little irresponsible? Especially if we are dealing with those who already suffered a devastating brain injury?
I’ll come back to that in a minute.
First, and on behalf of Pádraig, I want to thank the girls of St. Mary’s HFC Secondary School. Last Thursday, they had their Christmas Jumper Day and donated all proceeds to Caring for Pádraig.
What the girls have done, keeping Pádraig in their minds during this time of Advent and preparation for Christmas is extraordinary. As this is an all girls school, Pádraig never had a direct connection with the students there. For them to decide to support Pádraig so generously was extremely kind. What they contributed to his fund will help him to get the support he needs in his efforts to enjoy as much as that is possible his new life.
No Risk No Fun is the favourite mantra of one of Pádraig’s favourite (and that of many, many others) and most experienced therapists.
She’s everything but irresponsible. She just acknowledges that most of the fun things we do, have a calculated risk associated with them.
Soccer, rugby, horse riding, surfing, swimming, climbing, running, driving… the list of risk-associated fun activities is endless.
For Pádraig it is standing, and walking in the Lokomat. Yes, there is a risk. And yes, he tremendously enjoys it because, as he says, that is when he feels alive.
He has also continued to train for next year’s second edition of the Iron-Month in May, an inclusive event when more than a hundred people will complete the famous and most difficult Ironman distances over a month, according to their abilities.
He is cycling at considerable speed, all by himself, covering a distance of nearly 5km every day.
But even if his decision to be active, to cycle, to stand and to walk, is a decision that seems somewhat too dangerous to some for whatever reason, he is entitled to take that decision in the same way that some of us take the decision to sky-dive, ski, or kite surf.
Only that in Pádraig’s case it required legislation to clarify his right to do so. The right to take decisions that do not seem necessarily ‘wise’ to others. This legislation is now six years old but it hasn’t been commenced yet. When all goes according to plan, it will be commenced in June of next year, seven years after it was approved by the Dail and signed by President Higgins.
Pádraig has participated in many activities promoting the new act. Together with Pat and myself, he was invited to contribute to a book which just has been published by the HSE and can be downloaded for free here.
It is very comprehensive and nearly 300 pages long with a wide variety of contributors. It is part of the efforts by the HSE to promote the law, make it more widely known, and to educate, especially those who will have to apply it.
Here is the article —
Decision-Making, Consciousness, and Civil Rights: The Categorial Imperative for Self-Determination. A Personal Account.
Pádraig Schäler, Patricia O’Byrne and Reinhard Schäler
‘However careful we are, and however slim the odds, a severe brain injury is something that can happen to anyone, and any family, at any time.’
The consequences of a severe Acquired Brain Injury (sABI) for the injured and their family are devastating. In one second, life changes so dramatically, it becomes unrecognisable.
Until it becomes the new reality. With huge, nearly unbearable, challenges.
A sABI is a brain injury that involves a long period of unconsciousness (coma) and a prolonged disorder of consciousness (PDOC). Persons with a sABI are very highly dependent, are often non- or minimally-verbal, and require, in most cases, life-long support with basic activities of daily living (ADL) as well as life-long rehabilitation.
Those injured are generally not given much hope for the future. Their ‘treatment’ is often reduced to a basic maintenance programme, hydration, nutrition and medication, where the end always seems to lurk just around the corner.
In Ireland, any decisions for those adults with a sABI are ultimately taken by healthcare professionals and the HSE. Current law does not provide for a role for the family in any decision-making for the injured, ‘incapacitated’, person (The Assisted Decision-Making (Capacity) Act 2015 will eventually repeal the Lunacy Act of 1871 and existing case law).
PERSONAL EXPERIENCE
Pádraig, our son, then 23 years old, suffered a devastating brain injury in 2013, when he was hit by a 4.3-ton van in 2013 as he cycled to work one bright morning on Cape Cod, where he had planned to spend the summer on a J1 visa. Nobody was ever prosecuted for the accident.
On the Cape, doctors suggested organ donation to his best friend and, after our arrival, to the family. After about a week, when Pádraig was still in an artificial coma, we, his parents, were repeatedly asked whether we really wanted an ‘intolerable life’ for Pádraig as he had not been showing signs of consciousness. Back in Ireland, in Beaumont Hospital at his bedside, we were asked which nursing home Pádraig was going to go to. That was the day we reassured him that he was going to live at home. There was a waiting time of at least one year for a transfer to one of the three suitable beds in the National Rehabilitation Hospital (NRH), the only such facility in the country; even then his stay was going to be for just about three months, the time required by the NRH to assess him and plan for his future care.
Our family is Irish-German. Pádraig has dual citizenship. We decided to move with him to Germany. Pádraig had gone to the local primary Gael Scoil, Scoil Mobhí. His secondary school was Coláiste Eoin. He had studied Irish and History in Trinity College Dublin (TCD). He loved living in Ireland. Moving to Germany was not by choice. Uprooting and breaking up the family, leaving his two sisters behind was heart-breaking. But none of us saw a tolerable alternative.
In Germany, we were made legal guardians (‘Betreuer’) of Pádraig by the courts, following a lengthy process of independent medical and legal reviews and including a court hearing at his bedside. When asked, the judge explained that one important lesson from Germany’s history was that patients had to be protected. Doctors had the power to put patients into any state of reduced consciousness, the judge said. Thorough checks had to ensure that history would not repeat itself.
Our being appointed guardians by the court meant that we could now legally assist Pádraig making decisions about his medical treatment, his residence and his financial affairs.
A few years later, and back in Ireland, we learnt that this was far from common practice. The doctors in the hospital where Pádraig was assessed for a home care package told us that they would decide on his medical treatment. HSE representatives told us that agency carers would, if they felt it necessary, call an ambulance and transfer Pádraig to the A&E of the nearest hospital, without consent or consultation. We were handed a copy of the corresponding HSE guidelines. Banks would not provide us with any information on his account as this information was not requested by Pádraig himself.
When we pointed to our status as legal guardians appointed by a German court, we were told that, according to the legal advice received by the HSE, this court order had no validity in Ireland.
This is when Reinhard rang the German Embassy in Dublin to enquire about their potential reaction to Pádraig looking for protection from the Irish authorities in the extreme case of the full rigour of the Lunacy Act being applied. Thankfully, the situation never escalated to that point.
Pádraig made a significant recovery from his injuries. His tracheostomy, suprapubic catheter and artificial feeding tube (PEG) had been removed. He began to make pronounced, very clear voluntary movements. And while he was still non-verbal and completely dependent for all activities of daily life, he had come off all medication. Above all, we had established that he could hear, see, read and understand everything – in Irish, English, Spanish and German.
Most importantly, he could communicate with tongue, hand and foot movements, and by using a switch (‘bleeper’) introduced to him by an outstanding therapist in the NRH who had sourced it from the Royal Hospital for Neuro-disability, in Putney, South West London.
CIVIL RIGHTS IN ACTION
Professor Fins, in his highly acclaimed book on sABI, Rights come to Mind-Brain Injury, Ethics, and the Struggle for Consciousness, reminds us that not too long ago everybody had a right to vote, except if they were women; everybody had a right to education, except if they were black. We might add that everybody had a right to marry, except if they were a member of the LGBT community. Today’s civil rights issue, Professor Fins says, is that of the right to rehabilitation for those with a severe brain injury – for those still left behind.
There are humble beginnings – beginnings that merit the full support of lawmakers, health professionals and society as a whole. Ireland signing the United Nations Convention on the Rights of Persons with Disabilities (CRPD) is one of those, although Ireland has still not signed the Protocol to that Convention which would allow people with disabilities to make an individual complaint to the Committee. The Assisted Decision-Making (Capacity) Act 2015 (the 2015 Act), is another step in the right direction of following the Categorial Imperative for Self-Determination especially for those who, because of the gravity of their injuries, still need a substantial step to be taken by society and lawmakers Towards a New Frontier for Human Rights.
COMMON SENSE IN ACTION
In the meantime, a good portion of ingenuity, humanity and a strong dose of common sense are required to by-pass the dreadful exclusive restrictions imposed by the Lunacy Regulation (Ireland) Act 1871 – an Act that even pre-dates the foundation of the State; an Act that we agree has no place in our modern civilised society proudly promoting equality, integration, participation, equal rights, and self-determination as its core values.
After his accident, we had tried on several occasions to get a statement for Pádraig’s bank account, which he had used to manage his financial affairs – consisting mainly of regular pocket money income and some once-off gifts from his family. There was no way the bank would issue that statement without Pádraig himself requesting it – or us going through highly complicated, far-reaching proceedings. (We had always explained when in contact with the bank why we were making the call and not Pádraig himself.)
One bright summer morning, Pat and Pádraig went to the bank where his account was held, equipped with the bleeper used by Pádraig to communicate: one bleep for ‘yes’; two bleeps for ‘no’; three bleeps for ‘maybe’ or ‘I don’t know’.
Pádraig arrived at the bank with a bright smile on his face, as suggested to him by Pat, ready to let the bank clerk know with a determined bleep that he was indeed looking for his bank statement. Pat explained what Pádraig was looking for and that she interpreted for him because he was non-verbal. Pádraig continued to smile. Without further ado, the bank clerk happily complied and issued that long-awaited statement.
In a similar fashion, Pádraig has voted in several elections since his accident, from local to national to European elections. He takes his duty as a citizen very seriously.
With our assistance, he set up Cúram Phádraig Cuideachta Faoi Theorainn Ráthaíochta, employing his own carers.
Pádraig is also the man behind the An Saol Foundation CLG, which is running a three year HSE-supported pilot demonstrator project in Santry, Dublin, the An Saol Rehabilitation Day Centre. It is the first such centre in the history of the State, offering state-of-the-art day rehabilitation facilities in the community including physiotherapy, occupational therapy, speech and language therapy, robotic gait therapy, and social rehabilitation activities to those with a severe brain injury and their families, to those who up to very recently had been left behind and without a voice.
During a recent visit to the supermarket, a friendly, well-meaning assistant came up to Pádraig and Pat. She smiled at Pádraig and said, looking over to Pat, ‘He is a great little helper, isn’t he?’ Pat, although appreciating the intended kindness, was more conscious of Pádraig’s dignity and the need to protect him from pity, answered, ‘Sure, he is of no help to me at all here in the shop. But, you see, his wheelchair is great for hanging heavy shopping bags.’ She did not mention that nor was there anything ‘little’ about him at 6’7”. With that, Pádraig showed his great infectious smile, causing the lady to smile too.
Pádraig’s ability to preserve his sense of humour, to non-verbally communicate and share that humour, to spread happiness is uplifting and inspiring for all who meet him. While he is fully aware of the restrictions imposed by his devastating accident, he does not perceive his life as ‘intolerable’, contrary to the belief of some of the professionals who strongly and repeatedly suggested very far-reaching decisions should be made for him.
With the help of one of his sisters, he discovered the pleasure of connecting with his friends through regular Zoom calls adhering to the COVID-19 social distancing guidelines – on most occasions from a sunny spot in the back garden.
THE CATEG ORIAL IMPERATIVE
In addition to the physical injury, deep trauma affects the injured themselves and those close to them. Its impact is rarely acknowledged, never mind addressed appropriately. Its significant effects on their mental health cannot be overstated, often bringing with it family breakdown, economic hardship and worse.
Life with a severe brain injury is incredibly hard, for those directly affected and for their families. It is possibly even harder if that brain injury happens to a young adult with their life and dreams ahead of them: dreams of finding love, a partner and, perhaps, establishing a family.
Those with a sABI not only deserve every help we can give them to realise their ability to the fullest, they have a right to receive that support.
Above all, the voiceless have to be given a voice and with it the power to inspire, drive and define developments that will make equality and self-determination real for them.
Decision-Making, Consciousness, and Civil Rights are connected by the Categorical Imperative for Self-Determination. The 2015 Act is a long overdue step to the realisation of the right of self-determination.
Pádraig, Pat and Reinhard, for one, are very clear that there will be ‘No Decision about Pádraig without Pádraig’.
This is chapter 1.3 from the recently published book, The Assisted Decision-Making (Capacity) Act 2015: Personal and Professional Reflections, edited by Mary Donnelly and Caoimhe Gleeson, published by the HSE, The National Office for Human Rights and Equality, and the Policy Division Support Service, under a Creative Commons License. You can download the book here.
The book is dedicated to everyone who has advocated for changes in legislation in this area, especially those who are no longer with us.
Being tall and having long legs is all fun & games, until you get into a small car.
Anonymous
Pádraig had to learn the hard way following his accident that there are more serious issues than getting into a small car when you are very tall.
It is next to impossible to get a wheelchair for really tall people. Wheelchair engineers try their best with workarounds. Although, workarounds is not what you need for a chair you spent a lot of time in. For example, inserting an extra seating block to indirectly give more height for the footrests is ok for that purpose, but it also brings up the tipping point of the chair. The stability of the chair is not something you really want to play around with.
Orthopaedic issues also become more common and complicated if your long legs and arms provide more leverage for unwanted forces. We were reminded of the very serious problem Pádraig had in late 2019, when he could barely sleep because some involuntary movements of his left leg managed to push his femur out of his hip. When we brought him to our hospital’s A&E Department in January of 2020, they gave him an x-ray and referred him to an orthopaedic consultant. Many months later, Pádraig got an appointment for December of 2021 – an appointment that was just re-scheduled to April of next year, 2022. Had he not gone to Germany last summer to get this issue seen to, he would still be in agony – until April 2022 at least.
If you don’t understand how this is possible and allowed to happen: more than two years to get an appointment to see an orthopaedic consultant (or someone on his team) when you are in such acute pain that you cannot sleep, I am with you all the way.
This is beyond comprehension. There is no way that they even have the faintest about what they are doing, or rather not doing, to those who urgently and immediately need their help.
In good news.
Yesterday, Pádraig said, and not for the first time in the recent past, that he does not have any persistent pain and that he is in good spirits.
What is relatively new is that when we asked him what is the one thing that he misses most now is: not being able to stand by himself. Communication is also important, but he has made progress on that front. It’s standing tall that he misses most. Because, as he said : “When I stand, I feel alive.”
It could, of course, also be that he finds it hard to sit in a wheelchair that was obviously built for a smaller person than himself. We didn’t ask him.
Here is another quote about standing tall:
Stand for what is right. Even if it means standing alone. – Suzy Kassem
Eventually, one day, every valley shall be raised up, every mountain and hill made low; the rough ground shall become level, the rugged places a plain.
A very happy, peaceful and hopeful second Sunday of Advent.
Hospi-Tales 