The Stroke Diaries — Part Three
There is a peculiar business to rebuilding yourself after a stroke. You come home, you are alive, you can walk, you can talk, you can feed yourself, and everyone is terribly pleased with the outcome.
And they should be. So am I.
But being alive and being back to normal are two entirely different things.
I have survived two strokes in seven months. The second one involved somebody going into an artery in my groin, travelling up into my brain and fishing out a blood clot. Quite remarkable really. Modern medicine has its moments, even if I spend a considerable amount of time arguing with it.
I came home with my brain still working, my personality largely intact, and an overwhelming desire to get on with my life.
Unfortunately, my brain had other ideas.
The bag of screws
I had a dream about a bag of rubble. Broken bits, odd pieces, things that had come apart. That’s rather how recovery feels. There is no convenient instruction manual, no diagram of what goes where, and certainly no helpful beautiful Swedish man standing beside you with an Allen key.
Just me, a bag of bits, and the task of putting everything back together.
One screw at a time.
Some things are surprisingly easy. I can touch-type. My fingers know where the keys are even when my thoughts are taking the scenic route to reach them. I can walk, although balance and tremors still have their moments. I can think, question, argue, write and create.
Other things are strangely difficult.
Words disappear. Thoughts become tangled. Sometimes I know exactly what I want to say but the machinery involved in delivering it seems to have gone on a tea break.
And the tiredness. Oh, the tiredness.
Not the ordinary sort of tiredness where you have done a hard day’s work and earned a good night’s sleep. This is the sort that arrives without permission and pulls the plug out of the entire operation.
I can be halfway through something interesting, something I genuinely want to do, and suddenly there is nothing left. No enthusiasm, no concentration, no energy. The body is present but the person operating it has apparently gone offline.
That is particularly infuriating when the person in question has plans.
And I have a great many plans.
The memory of pain can hurt
Some mornings I woke with a pain in my head.
Except I am not entirely sure it was pain. Not in the conventional sense.
It felt more like the memory of pain. An echo.
As though my brain was revisiting the intrusion, the injury, everything that had happened to it. The memory was painful enough to feel like the real thing.
How do you explain that to somebody?
It isn’t simply remembering that something hurt. It is experiencing something that feels like the pain itself, over and over, without being entirely certain what is happening.
Painkillers don’t seem to make much difference to that sensation.
I am not claiming to know the neurological explanation. I am describing what it feels like from the inside. And I know that after a stroke, a headache or new confusion cannot simply be dismissed as healing. It is one of the uncomfortable uncertainties of recovery.
There are other moments when my thoughts are jumbled, when life seems to have been tipped out of its box and I am looking at the contents wondering what belongs where.
I observe.
That is something I have learned over many years through meditation, shamanism and working with my own mind. I observe a sensation, I examine it, I try not to become tangled up in it.
But observing does not always provide an answer.
And I am discovering that living inside a recovering brain can be a rather strange place to live…or maybe my brain was ALWAYS a strange place to live.
I am not a collection of symptoms
One of the difficult things about having a stroke is that suddenly you become a medical problem.
Your blood pressure, your heart rhythm, your medication, your movement, your memory. Everybody wants to measure something.
I understand why. I just do not like it at all
But somewhere inside all those measurements is an actual human being who wants to get on with her life.
I have never been particularly good at accepting instructions without explanations. I ask questions. I want to know why. I want to understand what is being put into my body and what it is supposed to do.
These days I have morning medication and evening medication. There are tablets to protect me from another stroke and tablets to control my heart. I take them, even though I dislike the whole chemical arrangement enormously. I can feel the chemical shitstorm rolling through my veins like poison. I do not like the idea I am on this stuff for life…why can they just cure me? oh yes, I remember, that wouldn’t be profitable to the medical industry, silly me.
It is not a comfortable compromise.
But neither is another stroke.
I am learning to live with compromises I never wanted to make.
And there is a difference between accepting something because you understand the risk and surrendering your right to question it.
I have not surrendered that right.
Rewiring the machinery
Neuroplasticity is a fascinating thing.
The brain is not simply a collection of fixed wires. It can adapt, build connections, strengthen pathways and find different ways of doing things.
That gives me something to work with.
I practise. I type. I walk. I speak on the radio. I write stories. I make music. I use my fingers, my voice, my memory and my imagination.
Sometimes it works beautifully.
Sometimes I make a complete dog’s dinner of something that would have taken me five minutes a year ago.
And sometimes the most useful thing I can do is stop.
That last one is proving particularly difficult.
I have spent years building things, creating things, learning things. Radio stations, websites, books, music, podcasts, courses, stories. My mind is usually several projects ahead of my hands.
Now my hands occasionally have to wait for my mind, and my mind occasionally tells the whole lot of us to bugger off and go to bed.
It is a negotiation.
Not always a polite one.
But every time I manage something that was difficult yesterday, I have another little piece of evidence that I am still here, still capable of learning and adapting.
I don’t know what will return, what will change, or what I will eventually have to do differently.
That is the honest
