Tenacity

One of Pádraig’s great (and sometimes annoying) qualities. That tenacity will bring him    An Saol over the line.

I would like to write more about this tonight – but I am sooo tired. So I’m going to bed and talk to you tomorrow. It was lovely to see one of Pádraig’s friends to come to a visit tonight!

Blindspot

Here’s the solution to see the obvious: just take of the covers of your binocular. Simple actions can do wonders.

bush

But that’s just the first step. Because once you see, you have to allow what you see to acquire meaning and allow the meaning to move you into action. All quite complicated. Because often psychological protective mechanisms kick in preventing us from getting too involved and allowing us to continue with our normal life even in the face of catastrophes.

We all have seen pictures of utter despair. But unless we experience despair, we are unlikely to offer more than our pity or our charity.

While pity and charity lower the pain for a short while, neither is sufficient to remove the causes of despair.

Imagine you lost the ability. To taste. To smell. To see. To touch and feel. To control your limbs. To eat. To drink. To speak.

Imagine you became completely dependent.

Imagine you could experience this yourself. Imagine that there are ways to re-connect your body and your brain. Imagine nobody cared enough to do so. Imagine you’d be left in this state for the rest of your life. Imagine we could offer you a way to experience this – even in a limited way. To live with several blindspots. Would you be curious enough to try it?

Pádraig had another busy day on his long way to recovery. When Pádraig cared enough about something he didn’t accept any limits. Anything was possible if you just worked on it hard enough. Nothing is possible if you accept the status quo and your limitations, if your blindspots turn into normality, if you play it safe all the time, if you don’t take risks, if there is no ‘skin’ in it. That’s the person he is. That’s why he has done the ‘impossible’ and that’s why we will move the earth, no less, to give him any possible chance of recovery. Right?

Let’s take off the covers and see clearly now. No more blindspots.

SecondLifeGo

Why do you feel passionate about something? Why do you get involved? Why do you spend your time doing one thing (and not another)? Why does one cause mean so much to you (and more than another)?

There is probably not one answer to this question. But my guess is that whatever you really want to do has to be interesting, engaging, rewarding, meaningful, and emotional. It should probably involve some kind of (at least partial) ‘bodily’ or physical experience: you want to see it with your own eye, feel it with your own hands, smell it with your nose, hear it with your ears, feel it on your skin… Think about the difference between reading about social deprivation and spending a day with a family who is really struggling. Or reading about drugs and spending a day in a methadone clinic. Or hearing about mental illness and helping out in a psychiatric hospital.

Or reading about acquired brain injury and being close to a survivor and their family.

So maybe what we need to do is to give people the experience of being deprived of the most basic pleasures of life and then being able to regain them with the help of others. ‘Playing’ something like Second Life Go.

Help them experience the almost complete deprivation of the most basic senses, of any level of autonomy, of utter dependency, a total lack of ability to communicate. – And then using technology and the help of others to ‘recover’ from this ‘dead end’ scenario.

Maybe if people experience first hand (well, almost) what it *feels* like to have a disability, to life with the consequences of a brain injury, to be dependent on others, maybe then they will *do* something to affect badly needed change.

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Pádraig had a good day with a new routine settling in that involves regular standing and exercises, as well as better planned resting hours.

Shortcut

There’s a note I wanted to take for myself. Just so I won’t forget.

picture 1000 words

I mentioned some of the risk assessments done here in the house before to make sure that none of the carers could injure themselves while working and subsequently sue their employers. When we got the tilt table ourselves (because it took months to get the stand-up bed), for example, a carefully carried out risk assessment established that the carers could under no circumstances hold Pádraig’s head when he was standing up in the tilt table – as they would have to stretch out their arms to hold his head and could do themselves and their arms damage in the process.

At the time I noted in a meeting with the HSE where this was discussed that no risk assessment had ever been carried out to establish the risk for Pádraig when he couldn’t stand up for months because of a lack of access to equipment that he needed to stand up. (It is normal hospital practice to get patients to stand up within days of an intervention to avoid one of dozens of the possible negative consequences for their health if they didn’t.)

Something slightly different happened recently. We wanted Pádraig to use the MOTOMed arm trainer, one he had been using in Germany on medical prescription (and under the eyes of a physio who worked with Pádraig at home for four double sessions a week) for months. A recent risk assessment determined that his shoulders have now become too weak to properly support the weight of his arms when being moved in the MOTOMed arm trainer and that there was a risk of doing damage to his shoulders if he used it. Our attempt to buy such an arm trainer was stopped. The one and only distributor of MOTOMeds in the country would not sell us the equipment.

There has never been a risk assessment in relation to the number and frequency of therapy Pádraig is getting currently versus the number of therapy sessions he would require just to maintain his current physical condition – or, even better, to support his enormous efforts to improve physically and recover functions.

In other words, ‘How much damage is the lack of therapy doing to his body?’ or ‘To which extend does the lack of therapy affect a meaningful recovery?’ are risk assessment questions that don’t seem to be asked. What does it mean for his arms, for his legs, for his upper body, for his lungs, for his head, for his brain, for his blood pressure, for his general health if he receives therapy just once a week (for short periods) or, more likely, once a month in the form of an ‘assessment’, or maybe not at all over long periods? How will it effect his health and chances of recovery if he works with carers on stretches instead of with therapists on a coordinated neuro rehabilitation programme? What are the risks that this will affect his current physical condition or prevent a meaningful recovery? What is the likelihood that he will acquire contractions instead, that his body generally will deteriorate without what would be considered by any standards the minimum amount of therapy necessary just to maintain his physical integrity, never mind to support a meaningful recovery?

Are risk assessments just carried out to *stop* something that could potentially do damage (but might not)? Or should risk assessments also be carried out to determine what will most likely happen if something that *should be done* is not being done?

Resonance

ˈrɛz(ə)nəns/
noun
The power to evoke enduring images, memories, and emotions.

That is what we need to invoke. To use the power of our voices to create more and stronger sounds all around us.

Just listened, by accident, to a song by Sanmy Davis Jr. called I gotta be meA song with a huge resonance.

Whether I’m right or whether I’m wrong
Whether I find a place in this world or never belong
I gotta be me, I’ve gotta be me
What else can I be but what I am

I want to live, not merely survive
And I won’t give up this dream
Of life that keeps me alive
I gotta be me, I gotta be me
The dream that I see makes me what I am

That far away prize, a world of success
Is waiting for me if I heed the call
I won’t settle down, won’t settle for less
As long as there’s a chance that I can have it all

I’ll go it alone, that’s how it must be
I can’t be right for somebody else
If I’m not right for me
I gotta be free, I’ve gotta be free
Daring to try, to do it or die
I’ve gotta be me

The song makes it sound easy. In life, at least at times, it seems almost impossible to be me and to be free. But I’ll keep trying with everything I’ve got.

Creating resonances.

Great Dublin Swim

We went down to the Liffey today to one of the many sea swims happening in and around Dublin during the summer, in preparation of the great Liffey Swim in August. Pádraig used to swim them. I tried two (gave up trying the first, and was pulled out trying the second:). One of his sisters has been swimming a few this year but this time was the first Pádraig came to support her. Quite a few people recognised him and came over to say ‘hello’ and ‘good to see you’!

There must have been some magic in the air today. See what happened.

For the first time, she won the swim.

Looks like Pádraig will have to go out and support her more often:)

Sitting at the kitchen table, with my head almost hitting the keyboard. Time to go to bed. Hope you enjoy the pictures as much as I o!!!

Scheere

There was a tranquility in the garden, a relaxed mood this late afternoon, when we sat outside with Pádraig. And when his carers arrived to get him ready for bed, there was laughter and a bit of banter, bringing a smile to Pádraig’s face. It was a first sign of some level of sustainable ‘normality’.

die-schere-im-kopf

Someone wrote to me the other day saying that they ‘felt’ the other story, not told here, at times. They are right. When I started to write this blog for Pádraig’s and our friends, it was a different story. Then, I did not feel scrutinised and exposed to the risk of stressful consequences. I would like to share what is my own personal truth of what has been happening to Pádraig, how this affects him (as I see it) and myself. How we are trying to get the best possible services for him. How so many people are helping us sharing their time, ideas, energy and love. But I feel the “Scheere im Kopf” getting bigger.

An Soal has published an ad on the website of the Irish Society of Chartered Physiotherapists for a senior physiotherapist (neurology) with an application deadline of the end of this month. If you know anyone who might be interested, please let us know!

(087) 981 8219

“And the people all said sit down, sit down you’re rocking the boat / And the devil will drag you under, with a soul so heavy you’ll never float / Sit down, sit down, sit down, sit down, sit down / You’re rocking the boat.” Don Henley

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There is a brilliant article by Salmon Rushdie in The New Yorker of which I lifted the reference to Don’s brilliant song, as well as the following few paragraphs. Sure, why not – lifting stuff from others is the in-thing these days. Here it goes.

At its most effective, the censor’s lie actually succeeds in replacing the artist’s truth. That which is censored is thought to have deserved censorship. Boat-rocking is deplored.

Nor is this only so in the world of art. The Ministry of Truth in present-day China has successfully persuaded a very large part of the Chinese public that the heroes of Tiananmen Square were actually villains bent on the destruction of the nation. This is the final victory of the censor: When people, even people who know they are routinely lied to, cease to be able to imagine what is really the case.

Even more serious is the growing acceptance of the don’t-rock-the-boat response to those artists who do rock it, the growing agreement that censorship can be justified when certain interest groups, or genders, or faiths declare themselves affronted by a piece of work. Great art, or, let’s just say, more modestly, original art is never created in the safe middle ground, but always at the edge. Originality is dangerous. It challenges, questions, overturns assumptions, unsettles moral codes, disrespects sacred cows or other such entities. It can be shocking, or ugly, or, to use the catch-all term so beloved of the tabloid press, controversial. And if we believe in liberty, if we want the air we breathe to remain plentiful and breathable, this is the art whose right to exist we must not only defend, but celebrate. Art is not entertainment. At its very best, it’s a revolution.

We rang the office of a therapist today. The receptionist took our message. Then she said that she just wanted to check our phone number. (087) 981 8219. She had tried to ring that number several times but couldn’t get through. (087) 981 8219 isn’t our phone number we said when the receptionist interrupted and asked how we could repeat that number so easily, if it wasn’t ours? No idea, although it sounded familiar, it defenitely wasn’t ours.

And then it hit us like an earthquake of the highest scale followed by a tsunami. Of course, several years ago Pádraig had been a patient there. When he could make and confirm his appointments himself. When he could use a mobile phone and leave his number. His number. It was a small detail. With a huge effect after a difficult day.

We now have to make his appointments. We have to ring. We leave our number. We are his voice. We explain that he is fighting so hard to get better. That he is fighting the fight of his life. A fight he almost lost a few times over the past three year. A fight he so desperately needs to win. A fight for which he needs all the help he can get. A fight we will fight for him, no matter what. Even if it means the beginning of a revolution.

“It is time for change. It is time for a revolution in rehabilitation.”  – Not my words but those of the person appointed by the Government of Ireland and the HSE as the National Director of Clinical Strategy and Programmes, Dr Áine Carroll. (Irish Examiner, 03.02.2011)

Choices

Lando: I had no choice. They arrived right before you did. I’m sorry.
Han Solo: I’m sorry too.
Star Wars: Episode V – The Empire Strikes Back (1980)

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While Lando apparently did not (they did arrive before Han Solo, after all), you do. Have a choice. You can decide how you’re going to answer the Ultimate Question of Life, the Universe, and Everything. As we even have the question now (thanks to someone who identified himself as the ‘Oisín’): “Whatcha gotta do in life?”, you have no excuse for not making your mind up about the answer. Is it ’42’? Or is it ‘Gotta keep it rollin’? – It’s up to you and no-one else to make that decision.

Pádraig is doing really well starting to make noises. Not just any noises at any auld time. But noises appropriate to the situation (at least from his point of view:). It sounds like comments at times (big ‘sighs’ at some senseless comment I made, for example) or ‘calls’ when he is uncomfortable during the night, or when he wakes up in the morning (at 6am:). He also has a different routine now, with a bit more regular scheduled exercise, standing, moving his arms, moving his hands, moving different items with his hands. At the same time he keeps cycling the MOTOMed, almost always in first gear and then, for five minutes, even in second gear. Today was the first time I showered him with one of his carers which worked out really well.

Tomorrow, we’ll have a meeting with two HSE managers. A gardener will check the weeds and some other stuff. The builders will be back fixing things. Another busy day. We have a choice. And we gotta keep it rollin’! That’s what I’ve learned from Pádraig. And you have helped me more than you’ll can ever imagine. To keep it rollin’.

 

Seriously Serious

Thanks for voting at last night’s first ever poll. Having carefully reviewed the votes, all two of them, it seems that there is a tie between the sax players at 3:28 and the first ever street dance in a studio at 7:32. 50/50, so to speak. – We desperately need another vote – either a third one or, sure why not, another one! You might have got it wrong the first time. Happens all the time! Just look around!

What really surprised me though last night was the disagreement from the other reader (the one who didn’t vote) about the answer to the Ultimate Question of Life, the Universe, and Everything. He insisted that a writer (someone called Douglas Adams!?)  assisted by ‘Deep Thought’ (who came up with that name???) was right when he declared the answer to be ’42’. Worse, he insisted that this man had even found the question!

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‘Deep Thought’!? – Come on! There’s nothing ‘deep’ about this, except the abyss.

The abyss we’re headed for in this world where ignorance and stupidity are taking over. Just look around you. If people come out with statements like this willy nilly, does anything surprise you anymore??? Anything?

42.

Really? I mean, you can’t be serious???

PS: The sad truth is that some people are. Seriously serious. Even if it only makes sense to them.

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