The most difficult items to part from are those with an emotional attachment and loaded with memories.
It’s completely illogical: I know that I will never read this book again, but because I bought it when we were looking for post-civil war books in antique bookshops all over Spain, including in the famous Cuesta de Moyano in Madrid, in Barcelona, Seville and many other places, because it reminds me of the good, carefree times, giving it away feels almost like giving up on those memories. I remember this book, because I walked for hours through dusty streets to find the shop in the sweltering heat of Barcelona.
I hadn’t seen that book in years, I was not missing it, but when I took it out of the shelf, this now ancient piece of paper fell out, with a six-digit telephone number and address, instructions on how, where, when and from whom to collect it.
These days, there are hardly any people left with landlines. You search, even for old, books on the internet from your sitting room. No sweat. No dust. No bell ringing when you enter the shop. No chat with the owner who must have been wondering what a German wanted this book for. Sometimes I think that there are hardly any people left reading books
Do you have to be old to experience nostalgia?
We downloaded a quizz app. One of those that asks you a questions and gives you three possible answers. It was free. The questions weren’t too bad, but…
… the print was pretty small. So small that we had to get the reading glasses out. We were about to read out the first question to Pádraig when he bleeped the answer. Turns out that Pádraig’s eyesight is pretty sharp. Or – ours is pretty bad.
Another surprise came yesterday morning, when I went into Padraig’s room and found him with his left foot stuck out of the bed and doing an exercise we are usually doing together or, more precisely, I do for/with him: I hold his lower leg with my right hand and rotate the foot with my left.
Turns out, he can do that much better without me. The above is just a very short version of what he did for a considerable amount of time. This is not just about him being able to move his foot, it’s also about him having the motivation to do the exercise, to do the planning of it, getting the foot/leg in the right position and probably another dozen of things.
Next Friday’s birthday is getting closer. Pádraig will be 30. Seven years ago, we celebrated this day in a nice restaurant and, after the meal, said good-bye to each other in Parnell Square. He was going to go on his last J1, having finished his degree, to Boston. He wanted to take some time out to think about his many options in life.
“Trau keinem über 30” was a very wide-spread saying during the student ‘revolt’ of the 70s in Germany. “Don’t trust anybody over 30”. You know yourself: you get married, have kids, maybe buy a house, settle down, become part of the bourgeoisie, watch the TV all night, lead a boring, uneventful live, you adjust, accommodate, compromise, fit in.
I got him a t-shirt, a picture, and a comic book: Trau keinem über 30. I thought it would be good humoured because Pádraig is anything but someone with these ‘normal’ characteristics, and has never been. My brilliant idea hasn’t been received as I would have hoped so far by the family….
An idea that definitely has caught the imagination of his friends is Raphael King’s “85k walk in 29 days“. Raphael shares Pádraig’s birthday on the 29th, so she has decided to walk 2.9k everyday during this month to raise funds for “Caring for Pádraig”, supporting his ongoing rehabilitation needs. Thank you, Raphael! You are an inspiration.
Earlier in the week, I wrote a Letter to the Editor of the Irish Times. Once I had sent it, I felt it would not be published. Not least because it commented on an ongoing case. That case has now been decided by the President of the High Court. So here is my letter.
Subject: Letters to the Editor – Interim Death?
Date: 17 May 2020 at 15:18:12 IST
Sir, — There is no ‘interim’ death. The ‘interim’ order by Mr Justice Mark Heslin of the High Court permitting a hospital not to resuscitate a brain-injured woman, “in her best interest”, as reported by Mary Carolan (“Court order permits hospital not to resuscitate brain-injured woman”, News-High Court, May 15th) is based on the wardship system governed by a Lunacy Act that is 150 years old. It has long been replaced by the Assisted Decision-Making (Capacity) Act 2015 – which has, however, still not been commenced.
According to the National Safeguarding Committee, the principles established in the United Nation’s Convention on the Rights of Persons with Disabilities are given no recognition in the current wardship system. The Committee states, “that the current system does not meet basic human rights standards for those in the wardship system” (https://www.sageadvocacy.ie/media/1153/review-of-current-practice-in-the-use-of-wardship_dec-2017.pdf). The recent High Court order was given against the expressed wishes of the family (who were not present or represented in Court) and without independent medical expert advice.
Some doctors continue to suggest to families affected by a severe brain injury that their loved-ones have no meaningful life to live. We know better. We see every day that a meaningful Life and Living with a severe Acquired Brain Injury is possible with adequate support.
Below is an update on the interim order made by a High Court judge last week. Unless I am missing something, what the article says is that: the interim order is now confirmed, though the woman has not yet been made a ward of court; her capacity to make decisions has still not been assessed by an independent expert (the family believes that she knows and understands what is going on, the doctors disagree); the family, having talked to doctors and the guardian, now agree to an “alternative treatment plan” by the hospital which is, essentially, palliative, meaning they will allow the woman to die should she require further treatment; in the meantime, the family would like to take her home, but they have not been allowed to do so. All that based on the fact that the woman has a severe brain injury and a “litany” of conditions I am all too familiar with.
Honestly? My heart is bleeding and I fail to understand what is going on.
What do you think?.
Here are the details reported last Wednesday, 20 May, by Ann O’Loughlin in the Irish Examiner:
The president of the High Court has continued orders allowing a hospital not to resuscitate or ventilate a brain injured woman, aged in her late 50s, with “a litany of conditions” and a “very poor” prognosis.
The woman’s family, who had previously wished ventilation/CPR to be pursued, consented to the orders.
Two clinicians involved in the woman’s care, in the woman’s “best interest”,
…supported an alternative treatment plan, described as “likely to be end of life care”, comprising ward-based management, conventional oxygen therapy and intravenous treatment.
The report goes on to say:
Mr Justice Peter Kelly was told today the family, following discussions with the woman’s court-appointed guardian and others, were consenting to the orders continuing and to the hospital treatment plan.
He was told by David Leahy BL, for the HSE, the woman is currently stable but “barely conscious” and will continue to require permanent oxygen support.
She has severe neurological damage as a result of an acquired brain injury, extensive care needs and very compromised levels of capacity. She suffers from a range of conditions, is tube fed, non ambulant, sleeps some 22 hours daily and is doubly incontinent.
Mr Justice Kelly expressed sympathy for the “very sad” situation the siblings found themselves in and said he did not underestimate the very hard decisions they faced.
The earlier disagreement with the doctors as to how their sister should be treated was “perfectly understandable” and other families who had come before the court had found themselves in a similar position.
He continued the orders and returned the wardship inquiry to next month.
He indicated he saw no reason why the siblings, in line with their wishes, could not be appointed as the committee to represent the woman’s interests if she is taken into wardship. The guardian supports the wardship application, the court heard.
The judge agreed a capacity assessment of the woman by an independent medical visitor could take place, as her sister requested, in the presence of the sister.
While doctors are of the view the woman is of unsound mind and lacks capacity, the family consider she understands what is going on around her better than the doctors think, he was told.
On being told the sister wishes to care for the woman at home after discharge from hospital, rather than have the woman returned to the residential care unit where she has been for many years, he said the home option could be considered by the woman’s treatment team.