Have you ever been in a pickle? – Do you know what “I’m in a pickle” means? I had to look it up when I heard it for the first time in an ad some weeks ago. I had to think about that expression this week for several reasons. Christopher McCandless story was in the news – making me think about our trip to Alaska. Making me think: they can take away the bus but they can’t take away our freedom. We were trying very hard to find an answer to Pádraig’s hip issue. And we were looking at ‘logistics’: our plans are changing around new doctors’ appointments.
Christopher McCandless was in a pickle when he ran out of food and couldn’t return from ‘Into the Wild’ in 1992. He lived in a Fairbanks Bus 142 for about four months in Alaska and sadly died there at just 24 years of age. Jon Krakauer wrote a book in 1996 and Sean Penn made a movie in 2007 about his life. Both are one of Pádraig’s favourites (and mine). Alexander Supertramp, his pseudonym, wrote a diary that inspired many, including Pádraig and one of his friends, to leave ‘stuff’ behind and concentrate on the essentials. Pádraig still has to go on that trip into the wild, to Alaska.
We’re working on it.
Last Thursday, Alaska state officials said the bus was removed by a heavy-lift Chinook Helicopter as part of a training mission “at no cost to the public or additional cost to the State”. (That must have brought a big sigh of relief to many.)
It was decided that the bus had become some kind of threat to public safety. Too many people, presumably unfamiliar with the territory, had ventured out to the bus and got not just ‘into the wild’ but also ‘into a pickle’. At least one other person died there.
I assume that the Alaska state authorities believe that people are now safer. I find it difficult to follow that argument. And really, removing that bus doesn’t make much of a difference.
If people want to get out and do it, they will just get out and do it. And they will be very very glad that they did. Nobody will be able to lock them up in their ‘safe’ civilised regulated and standardised lives by removing a bus.
Talking about buses.
A friend of Pádraig’s recently bought a bus for herself. It’s even wheelchair accessible. Pádraig hasn’t asked her yet. But, maybe, one day he will. And, maybe, just maybe, she might give him a loan of it for a while.
We went for a walk on Friday, up a very steep narrow road, to Pforzheim’s main cemetery. I’ve often thought that how people burry their dead says a lot about them. German cemeteries are like parks. Really well maintained parks. And the graves are like really well-maintained little gardens.
When I went with my mother to visit my father’s grave many years ago, she regularly said to me that she was afraid to die because of my, in her eyes, very little satisfactory approach to grave maintenance. She would really feel very uneasy thinking that I would’t look after her grave properly, as if it was a well-manicured very small version of a French garden. I am sure it wasn’t just that but the thought of one day being buried in an untidy grave really felt unsettling for her.
Here in Pforzheim part of the cemetery is a memorial for the more than 13,000 people who were killed in just one night, on 23 February 1945, when the city was fire-bombed for just a 22 minutes by the British Air Force for apparently no reason. – We discovered the monument some years ago and it’s a quiet, somber place perfect to reflect on life and how we cherish it – or don’t.
There is also a memorial to those who were killed by the nazis because they happened to have a disability. The memorial lists their names and ages, some of them as young as eight years old.
I took a video and when I looked at it again, I realised that you can just about see Pádraig’s reflection in it.
The memorial is incredibly moving in its simplicity: To remember and to commit (“Zum Gedenken und zur Verpflichtung”) and then quoting article 2 of Germany’s Constitution (basic law or “Grundgesetz”): “… everyone has the right to life and physical integrity” (… jeder hat das Recht auf Leben und körperliche Unversehrtheit).
I came across and added a screen capture of a tweet from last week showing how the President of the United States is campaigning for his re-election using a symbol the nazis used to identify political prisoners in concentration camps.
During the week, there was a bit of a commotion in the centre. Someone had left a big big fruit basket for Pádraig with a really nice card.
Turned out that a family, friends of ours, had heard that Pádraig was in their neighbourhood and had sent him this really thoughtful and beautiful and nice tasting present. It lit up his (and our) whole week!
We also got a visit from my sister and husband which was really nice. We managed to go out and have a pizza in a lovely beer garden / open air pizza cocktail bar. All socially distanced and our names logged in with the restaurant, just in case… Being out, seeing other people in normal circumstances felt like a whole new experience.
I put together a few pictures and videos of Pádraig to show how much in control he his of his body, how he can, being asked to do so, move his arms and legs – even the right leg which is compromised by his bad hip.
Moving his right arm.
Moving his left leg.
Moving his right leg.
We also rediscovered a way to help him holding his head in the lokomat which he is now using for the full scheduled 45 minutes every day.
After many conversations and advice from different people, including several good friends and specialists in Dublin, we made two appointments with specialist surgeons here in the South of Germany to assess and possibly address Pádraig’s hip problem. We discovered that there is a field called ‘neuro-orthopaedics’ where surgeons have experience not only with orthopaedics but also underlying or connected neurological issues. If Pádraig needed a surgical intervention, even his anaesthetic would be complicated. There are not many patients like Pádraig and few surgeons would have the necessary experience to treat him. We want to feel comfortable that the doctors and their team have the necessary experience and knowledge.
It means our plans will have to change and that we will have to figure out a few details. But we’re well used to that.
What happened to Pádraig’s hip is not unusual and is, to our surprise, a pretty well-known development in cases like Pádraig – of which, it has to be acknowledged, there aren’t that many. I do not remember that anyone responsible we asked over the past year and a half or so explained to us what was going on. Never mind initiated an appropriate treatment plan for him. E-mails and enquiries remained unanswered, referrals did not materialise, solutions offered remained at the level of a 45 minutes demo session of stretches for Pádraig aimed at carers.
I might be completely wrong but I think many do not see Pádraig walking again ever. Even if walking is the best therapy to prevent many of the secondary injuries or illnesses – such as that with his hip.
A bit like the approach to his catheter, his tracheostomy, his PEG, his eating and drinking, travelling and reading.
Nothing with Pádraig without Pádraig. He wants to be here. He wants to take on any problems and try to address them. Today, when we asked him what he was thinking – was he thinking about his hip, did he feel any pain – it turned out that he was listening to a song on the radio about hope.
It seems that the rehabilitation of those with a severe Acquired Brain Injury has to be driven by their family who share their hope.
Hope that is not desperation. Hope that you need when you are in a pickle. Hope that gives me the strength to keep going. Hope that gets us out and do it. And I am sure that we will be very very happy that we did.
Diane Rose said:
Great post! Thrilled to see all Padraig’s progress… and to see all of you beating the odds (despite all the indifference of the traditional medical establishment.
Thank you, Diane. 🙂
Donna Parrish said:
I am reminded of Emily Dickinson’s poem “Hope” is the thing with feathers
“Hope” is the thing with feathers –
That perches in the soul –
And sings the tune without the words –
And never stops – at all –
And sweetest – in the Gale – is heard –
And sore must be the storm –
That could abash the little Bird
That kept so many warm –
I’ve heard it in the chillest land –
And on the strangest Sea –
Yet – never – in Extremity,
It asked a crumb – of me.
How beautiful is that, Donna! – I get the feeling that when people say ‘there is always hope’, in a strange way many really mean that they are looking at a hopeless case. Like: There isn’t much more that can be done, so let’s just hope for the best. But hope goes with strength, focus, conviction, energy, perseverance, dignity, and respect. It never stops. At all.
Thank you for the long post!
I was thinking of you and Padraig:
I´ m working in the outpatient rehab in St. Gallen and last week a young patient (23 years) after a brain injury – 6 years ago had to be assessed. The institution where he lives and doctors see no rehab potential. But his family wants at least some therapy for him again.
This young man truly has potential, we had a lot of fun when he showed me Albanian rap music he listens to on his phone. He clearly told me he wants therapy and not stare at the walls in his room and lie in bed.
I will strongly vote for therapy for him!
All the best, and keep fighting – I know it must be exhausting
So good to hear from you, Christina. The world needs people who don’t give up. A 23 year old listening to Albanian rap music has no potential??? Maybe no potential to work in a bank. He probably never had that. Lying in bed and staring at walls would be as boring as an ordinary job (in a bank:). That young man is far from ordinary! He needs your vote!
We will keep fighting. And we are exhausted.
Pádraig will need one or two really good and enthusiastic therapists to get him over the next year or two. He will need to stand and walk every day. And his mind will need excitement and entertainment.
Albanian rap music? – Why not!