Help

We keep trying. What we can. Pádraig does and so do we.

There more I keep reading, talking to others, thinking about what is going on, so less I understand it.

We are all reasonable people. Living in a civilised society. Where the convention is that we help each other, especially when help is most needed. That is why we all agree that something has to be done about homelessness, drug addiction, refugees, single mothers (and fathers), the unemployed, the sick, the old, and the vulnerable.

We have the CRC and Enable Ireland helping people with disabilities from birth. With have support for persons with cancer, stroke, and renal illnesses.

We believe that people to whom a grave injustice has been done should receive compensation.

Now explain to me why young persons with a very severe acquired brain injury are left with just basic care.

The truth is: there is no reasonable explanation for this injustice and, how Prof Fins calls it: negligence.

I will make it my mission in life to change this. Help me!

Refugees

“By now the scene is familiar and the story predictable. An expectant family is in my office at Weill Cornell Medical College sharing the story about how a son or daughter, husband or wife, mother or father sustained a brain injury. (…)

“When they arrive, most are worn out. They are like refugees, having been cast aside by an indifferent health care system that provided brilliant emergent care only to abandon them thereafter. Irrespective of differences in race, ethnicity, class, or state or origin, a stereotype of neglect emerges. (…)

“Brains recover by biological standards, not reimbursement criteria. To impose the latter on the former is to fail take account of time frames needed for recovery by the injured brain, which as a nonlinear system resists simple predictive models. Yet that is precisely what medical necessity presupposes. It dictates the length of rehabilitation, access to brain-injury treatment programs, and other benefits. A reimbursement construct, written into federal law, medical necessity is seen by families as scripting dire outcomes. It is an affront to patients and families because it denies care notwithstanding our evolving understanding of biomarkers of the recovering brain.

“(…) Put another way, if we do not yet understand how brains recover from the MCS (minimal conscience state), and the time it might take, how could anyone say progress is delayed? Or that a patient is an inefficient outlier whose benefits should be curtailed?

“(…) Patients not “showing progress” are discharged from rehabilitation programs to nursing homes where they linger without rehabilitation or diagnostic oversight. The impact of a medical necessity determination is high, potentially depriving a patient of the opportunity to recover or, as critically, be placed in a medical context in which an emerging recovery might be identified.

“This is not a trivial problem. Recent data reveals that the diagnostic error rate of patients with traumatic brain injury in nursing homes diagnosed as vegetative may in fact be as high as 40 percent, with this patients actually being in MCS. This is troubling data and a significant error rate with profound implications. It means that a large number of patients are taken to be permanently unconscious when in fact they may be conscious, albeit in the MCS. Although there is a risk to the following speculation, I am haunted by it: imagine lying in a nursing home bed, cognitively impaired and wondering, why the staff and even your family are treating you as if you are not there. What would possibly be the reason? Don’t they care? Don’t they know I am here?

[Joseph J. Fins, Rights Come to Mind, Brain Injury, Ethics, and the Struggle for Consciousness, Cambridge University Press, 2015]

It has been a long time since I’ve read anything as important as the above.

This is the research that will drive the change that we need.

After this, no-one will be able to say that they understand our ‘personal tragedy’ but that a health system has to look at a ‘return on investment’ – thus justifying the abandonment of our loved ones, justifying un-justifiable negligence.

The above has been written by a heavy-weight: Joseph J. Fins is the E. Williams Davis Jr. M.D., Professor of Medical Ethics and Chief of the Division of Medical Ethics at Weill Cornell Medical College where he also serves as Professor of Medicine, Professor of Health Care Policy and Research, and Professor of Medicine in Psychiatry. He is the founding chair of the Ethics Committee of New York-Presbyterian Weill Cornell Medical Centre where is is an attending physician and Director of Medical Ethics. Dr Fins co-directs the Consortium for the Advanced Study of Brain Injury and is adjunct faculty member and senior attending physician at Rockefeller University and Rockefeller University Hospital. And the list goes on…

He is a someone who knows what he is talking about. – As we do.

Just in case you went through the few paragraphs above in a bit of a hurry, go back and read them again. Slowly. Then send a link to this to your friends. Especially if they work with severely brain injured persons or have a severely brain injured family member or friend.

Cake

Following a late night of partying not everybody made it to our weekly social gathering – but we had some new friends joining us today. It made a really nice and lovely afternoon in the company or great people. It was better than any Café could have been with a selection of home made and some bought but really excellent cakes and sweets, complemented by coffee, tea, herbal tea, milk and ice cold water.

Maybe we should call the whole enterprise the “An Saol Café”?! Pretty breathtaking what was shared this afternoon on those tables! Great food, great conversation, and brilliant company.

Now – spread the word and get your friends to join us next Saturday!

I had forgotten to mention that with the party last night and everything… but Pádraig had his first big long conversation yesterday with some of his friends who had come over to visit. You should have heard to shouts and laughter as Pádraig was having them on. Just using his bleeper. It was a miracle how they got all on with each other and how well they understood each other. It was pure fun. – The way it should be.

3rd Social Gathering

We will be continuing with our Saturday meetings this coming Saturday
Share your experiences with others!
Gather strength and courage!
Flavour life, literally!

The An Saol Foundation’s 3rd Saturday Social Gathering
of survivors of severe Acquired Brain Injury (sABI), their families and friends
Everybody welcome

Saturday, 18 February 2017
2pm – 5pm

Odin’s Wood HSE Day Care Centre
Kildonan Road
Finglas West
Dublin 11
Eircode: D11 H526

Enjoy an afternoon with great tea/coffee
Bring a cake, a game or an instrument
Bring yourself, friends and family
Please help us to spread the word!
http://www.ansaol.ie
Reinhard.Schaler@ansaol.ie
For enquiries: 087 – 6736414 (Reinhard)

Confirmation

At a meeting this morning, the HSE confirmed that the An Saol Project we proposed to them will be funded and that we will start with its implementation straight away.

screen-shot-2017-02-15-at-22-05-27

About an hour later, the Irish Minister of Health, Simon Harris, T.D., confirmed this during his opening address at the National Carers’ Conference. He caught me a little bit off guard as I had not expected the announcement by him, so I lost the first few seconds of his speech. Here is what I managed to record, the Minister talking about An Saol:

I have been assured that we will receive an official letter from the HSE by the end of the week.

It’ll take a little time to sink in. But if this is all true, and there is no reason to suspect it ain’t, then we’re about to embark on some really good and exciting work here that will change the way how people think about those who have survived a very severe acquired brain injury, as well as the way they and their families are being treated by the health system.

A big thank you to all who have helped us to make this happen!

Kaputt

I am kaputt tonight. Tuesday is Pádraig’s swimming day and although I am not doing much in the pool it makes me sooo tired. It’s the biggest pool ever. The biggest. Really. Unbelievable. But it’s true. It’s true. Believe me. (I don’t like admitting to this but I have this voice in my head and it doesn’t go away…)

kaputt

But the tiredness was blown away but what happened in the pool today. For the first time ever, Pádraig pushed himself up and stood on his feet, with just some support. Not for very long. But that’s what he did. He also moved his feet through the water, like walking. As if that hadn’t been enough, he held on to the bar on the pool side, pulled himself in and pushed himself out – several times.

Really, this was one of the best days in a long time and one of the most amazing things Pádraig has done. There’s no pictures of any of this, no pictures allowed, so you have to use your imagination. It was pure magic.

Of course, today is Valentine’s Day. And guess what? – I got hyacinths. In a pot. Ok, it’s not roses. But hyacinths ain’t bad either.

All in all: a St Valentine’s happy day!

Family

First of all, let’s park that romantic notion of family: all understanding, all loving, all civilised, all friends, all the time. I’m honest: there are things I’ve said to my families, both the one I was born into and the one I co-founded, I’d never have said to anyone else, on both ends of the scale. There is behaviour my families have experienced I have never shown to anyone else – and I’d prefer nobody else to know about. On both ends of the scale. I don’t want to presume anything here. But I don’t think I’m on my own here?

The first time I left home for a year abroad, I felt so abandoned, so alone, that I wondered how I would ever survive this year without being able to share what was going on in my life with my family. Not that I wanted them to know about everything that I was doing, but I missed their encouragement, their understanding, maybe just their attention.

Even though my ‘first’ family is getting smaller, it hardly exists anymore, and even though my role in my ‘second’ family is very different (I’m supposed to be the one listening:), I still feel there is anyone better, more understanding, more patient, more encouraging, than the members of my family. If anything happens, no matter whether it’s a cause for celebration or cause for tears, the are the ones I want to know first. And if I really need help, I know they’ll be there for me.

That first years abroad I mentioned earlier changed my whole life around in different ways. I had the deepest conversations ever with people I had never met before and didn’t meet since. They told me things they had never told anyone before, and so did I. One of the lessons I learned from these conversations was that the most opposite of feelings never exist on their own. They (almost) always come together. To feel strongly about something or someone, they must be important to you. You’d never love, nor relate in a really negative way to a complete stranger – they wouldn’t be worth these intensive feelings. It takes someone really close to you to experience the whole range of feelings. And to learn that love will always win, if you let it.

Pádraig had a good day. Getting ready for and looking forward to tomorrow’s swimming session!

Check out today’s The Herald Newspaper with two articles about the need for better NeuroRehab in Ireland.

2017-02-13-19-46-herald

2017-02-13-22-03-herald-editorial

http://www.herald.ie/news/we-jumped-on-a-plane-rather-than-wait-for-care-35444931.html
http://www.herald.ie/news/we-have-56-beds-in-neuro-rehab-but-we-really-need-280-35444928.html

 

Zen

Sightseeing with my sister. Breakfast at Kilkenny’s. Looking at shops ’round Henry Street. Conversations not had in a long time. Tired tonight.

Remembering last night in Fagan’s, packed with people coming out of Croke Park. Having fun I felt completely unconnected with. Having it all so clear in my mind. All of a sudden. The road to Damaskus in Fagan’s.

No more wasting time. Focusing on life. On what is important. Something everyone should do. Just with more urgency in a case like mine.

Looking at this as a normal life is a ‘tool’, maybe even a kind of figure of speech, to explain, including to myself, the only way to deal with what is a very not-at-all normal life situation. When there ain’t as many options left, there has to be an even clearer focus on options that make sense, that have meaning, a purpose, a heart, love, compassion and zen.

No more getting distracted by noise, by worrying about things I won’t ever be able to change, no more despair about people who lost their way, no more sorrow about injustice, lack of understanding, lack of respect, lack of…

There won’t be anymore ‘lack of’, only the ‘road’ we’ll travel on, only the river we’ll go down in Pádraig’s Dreamboat Into the Wild. Together. In Company.

Cakes

More cakes, coffees, teas and biscuits, as well as a lot of good conversation and exchanges. An afternoon out. An afternoon shared with friends.

Today’s second An Saol social gathering was a bit quieter but really good for conversations and an exchanges of experiences amongst like-minded friends. Thank you to all who where there, brought cakes along, and shared their company with us!

We decided that for next Saturday and the coming weeks, we’ll make more use of the other rooms in the centre and organise an hour of activities, like games and music sessions for the injured family members, from 3-4, so that they get something even more special out of the afternoon.

If you know anyone with a sABI, please pass on the word about our meetings to them. I will not be able to be at the meetings every Saturday afternoon for the whole year, but we’ll go ahead with the weekly meetings as often as possible.

We know that our friends from Longford will only make it once a month, so that Saturday will be extra special!

Today is my birthday and my sister came over from Germany to celebrate with us. It was a good day.