No turning back now.
Dad went to meet the consultant who will perform the operation tomorrow [Day 25]. Thankfully, he presented the necessity for the operation [carotid endarterectomy] clearly, concisely and compassionately. And, while being realistic about its inherent dangers, left dad reassured and acceptingly philosophical over the choice.
Having witnessed such remarkable progress to this point, it seems almost counter intuitive to return to the hospital and willingly plunge yourself into the vagaries of chance again so soon; the temptation to simply go with how you’re currently feeling. But the only virtual guarantee without the operation is another stroke: next year… next month… next week… tomorrow… And that, realistically, is an impossible thing to live with. “It would be like walking around with a time bomb waiting to go off in my head.” A time bomb that would now likely kill or permanently paralyse. Essentially, the very epitome of Hobson’s choice.
So, tomorrow will inevitably feel like the longest day. Dad’s being picked up at 7:00am. Operation will be late morning and lasting 2-3 hours. Given his age/condition, it will be an overnight stay, but home on Friday without complications. And then… get on with the rest of your life [and, of course, the ongoing torture of the daily physio visits and his ultimate measurement of recovery and motivational aim: to play golf again. Which is usually a bloody long walk! Even the way he played it before the stroke! : )].
I took this photo about an hour after he came home from hospital today. His 79th birthday. All things considered, an extremely welcome present.
Within 5 minutes of getting home my wife somewhat incredulously caught him half way up a step ladder into the loft, “There’s another walking stick up here somewhere…” Yeah, well, we’ll be sure to get it down for you and put it on the stretcher when they take off in another ambulance after you’ve broken your neck! Unbelievable.
Dad continued to make steady physical progress throughout the first week of 2012, but it seems clear that the autonomic rewiring has finished and now it will be down to the daily visits of the physiotherapists [for 6 weeks] and his own motivation to reinforce and strengthen those newly constructed neural pathways.
Here you can see how his left hand is attempting match his right but, despite immense effort on his part, stubbornly refuses to comply; the arm and hand tiring quickly as the tension of the movement slowly evaporates. The index finger is working much more effectively now, in tandem with his thumb, but the second, third and fourth fingers currently remain ‘mostly asleep’. Dad often reports the sensation of holding something which isn’t there. [Er, like a step ladder?!]
During the week he had another scan of his neck which showed severe stenosis of his right carotid artery. On the plus side, this is virtually guaranteed as the cause of his stroke, but with his rating at 70-75%, means he will need to return to hospital on Wednesday for a carotid endarterectomy. Think: your drains need rodding to clear a blockage, then apply that image to the artery in your neck.
Obviously, as with any operation, there’s a risk – of death and/or of a second stroke [between 1-5%] – but it will reduce the likelihood of a second stroke occurring within three years, essentially a daily living form of Russian roulette, by 33%. So, it’s a bit of a, umm, no-brainer.
Psychologically, dad’s currently dealing with the idea of the operation, but is otherwise in good spirits and very happy to be out of the acute ward. Two guys sadly died during the week and, as we were leaving, another is now on permanent oxygen and fading. When we take a look around us, the reality of dad’s progress in less than three weeks since admission is truly blessed and remarkable.
The brain is an extraordinary thing. And to witness its innate ability to rewire only adds to its weird and wonderful aura. But along with the brain, comes the mind. And with it, the real challenge begins.
The images here quite clearly illustrate the brain’s remarkable, largely autonomic, rewiring capacity. In just two short weeks; from a starting point of complete paralysis of his left side, dad can now walk, head [and catch] a ball, and the hardest thing of all: pick up and place small plugs into a cup. [If you look at the right hand image, you can see the tension in his background right hand. He also lifts his left leg too, such is the effort involved in that task. The complex mechanisms of the hand are notoriously the slowest to respond, and require the most ongoing work.]
All this has been incredible to see. And, removing all the wishes and hopes from the equation, it’s honestly the last thing my step-mum and I had expected in this time frame. But now, there’s a new hurdle on the track… his mind.
A couple of days ago we had a meeting with the entire stroke team [doctors, nurses and physios], every one of them remarking on his exceptional progress. The mood was buoyant. And finally suggesting, at this rate of improvement, he could be home in a week; something which seemed completely incomprehensible not much more than a week ago. And there sat dad, silent, distant. All perspective seemingly lost. To him, that week sounded like a month, a year!
It had been creeping in for a couple of days now. The gentle humour receding, the anxiety and the grumpy emerging. I say, emerging, but in reality, re-emerging. It was partly where the idea for the journal came from, sensing this part of the challenge that lay ahead of him; to maybe give him an empowering outlet for those feelings and emotions when they came.
One thing my step-mum is slowly realising, she appears to be getting back exactly the same man that came in; the man of his more later years. Two weeks ago a blood clot slice him in two and his brain responded incredibly. And now, two distinct slices of his personality – the genuinely lovely, determined and the humorous, and the anxious and the grumpy – are responding to the challenge. And which balance of those characteristics gain the upper hand may well be the ultimate arbiters to his level of recovery.
‘Of all people who suffer from a stroke. About a third are likely to die within the first 10 days. About a third are likely to make a recovery within one month. About a third are likely to be left disabled and needing rehabilitation.’ The Stroke Association 2011.
It’s still admittedly early days, but to our and the stroke team staff’s collective incredulity, it’s looking increasingly likely that dad will predominately, if not entirely, inhabit that middle third category.
I’ve often had my doubts as to the complexity of my dad’s brain. But now, thanks to recent events, I think we’ve finally had it confirmed beyond any lingering doubt: it’s quite a simple one. I mean, to have made such extraordinary progress from where we were barely a week ago, clearly there’s not a lot in there to go wrong, eh?
So, today you get him in his own words, from the journal [below] I tactfully gave him for Xmas. My dad’s never been much of a writer. And he’s certainly never [to my knowledge] had a journal. So this is all new territory. All part of my subconscious feeling that was the catalyst for this documentary, all the psychological tooling up for what seemed like the challenge of his life.
You also get to subtly witness another aspect of my dad here. We’ve been through a great deal together in our time – notably after being cast adrift when my mother suddenly left home when I was 12-years-old [taking my then not-quite 2-year-old sister with her]. I’d find it difficult to adequately express how much his support through the baffling teenage years meant to me, but it’s also no great surprise, here, to witness his somewhat perfunctory prose. He’s a genuinely lovely man, but emotion and feeling would often require an electron microscope to locate. Maybe the journal will find them?
Update: [Day 11] I’ve just put the phone down to my step-mum, effusively telling me that in front of the disbelieving consultant/stroke team on rounds this morning; dad got out of bed, walked to the kitchen, made himself a cup of tea, drunk it, then walked back to bed. : )
My friend Amy wrote the other day: Life matters. Dignity matters. Love matters. And if Xmas encapsulated anything, in all its strangeness this year, it was how they all came together with the spirit of hope.
Dad has continued the gentle upward curve over the Xmas period: his mind becoming increasingly clearer; his appetite slowly returning; once hoisted out of the bed he can now stand for short periods; and I’ve quite warmed to the steely determination he’s begun to adopt with the more stubborn left hand – attempting to crush mine in our newly adopted handshake. An auspicious thumbs up on the progress, so far, then.
Oh, and I won this year’s traditional, familial Xmas Day arm wrestling competition. Albeit the winning of the coin toss arguably proved important. Best of three, alternate arms, I won the toss so chose to start on the left for a 2-1 win. Result! : )
As the rewiring continues, the daytime dreamlike hallucinations are apparently curiously entertaining. Birds flying in through the window and sitting on the bed opposite. Dogs casually wandering down the ward. Random faces appearing in the curtains. And the fixtures and fittings occasionally swirling around in elaborate dance formations. I’ve been there when this happens. He’s perfectly awake and lucid, describing the scene as if its inexplicable that I can’t see it, too. And yet, as soon as he closes his eyes, opening them again wipes the hallucination away like a real life Etch-a-Sketch. The strangeness and charm of stroke recovery.
“Reaching out for a hand that we
Everybody’s got a hold on hope
It’s the last thing that’s holding me”
– Guided By Voices