Tuesday, 28 February 2017

23/24th Feb 2017: thoughts for today, 18 years post stroke

I originally posted this as a note on Facebook on 23rd Feb. Then I thought why not stick it on the blog? Somehow it seems important to do. I mean even one of my uncles felt compelled to share my story. So here you go...

Thoughts for today, 18 years post-stroke.

 Eighteen years ago today I died. I had major surgery that took, in the end, well over 20 hours' of hard work because of complications that then required 2 teams and a third surgeon from another hospital for an emergency procedure. It also involved countless pacings upon the floor by the medics, orderlies, friends and family in the hospital and at home. During the op I also suffered a massive stroke.

To this day people are still unsure of what that means, what a stroke is, they do not understand the struggle or effect of a stroke and often think a stroke survivor like me is OK - because they look OK.

I just thought I'd remind people, and myself, about the brain injury that a full and complete stroke is and how it leaves its invisible scars. Because to be frank I am still coming to terms with its aftermath.

Here's what happens in your brain as it's starved of oxygen :

Every minute that a stroke occurs 1.9 million neurons, 13.8 million synapses and 7 miles (12km) of axons are lost... So for every hour the stroke is continuing that's like 3.6 years' worth of ageing in the brain. That's pretty scary, right?

Then when you realize that a complete stroke cycle ('massive stroke') takes 12 hours that's about 36 years' worth of ageing in the brain alone. Of course so far that's not even addressed the issues of what that translates to in the body and mind...

The damage that a stroke does can completely disable a person, even make them a 'vegetable' (a vulgar shorthand for entering into a permanent vegetative state). It depends entirely upon where in the brain it occurs. Mine was ' somewhere' vaguely at the back of my brain, one assumes in my occipital region, roughly into both hemispheres of the brain, slightly more damage in the right. So, I was paralyzed down my left side. I could not speak. In fact, the left hand side of the world was invisible to my right brain. Of course I was aware of it because I could see bits of it out of my right eye. But I couldn't turn my head that way. It was a very strange feeling. It was like a big dark wall had occurred overnight and I could not find a door to the left... So confusing.

But, I thank God I was only 24 because very quickly my speech came back and by the end of the first week I was hardly having problems with speaking, although finding words was very difficult. The rest of the 3 months I was in hospital were spent trying to get me back on my feet, fighting infection, having yet more surgery to give my left leg some skin grafts on the gaping wounds that needed to be inflicted to save the leg and quite possibly my life. Oh, yes, and recover from the heart surgery...

© S Deeming, 2015
The skin graft surgery put my stroke rehab on hold because I had to keep the leg still for 3 weeks. Mercifully the grafts took and after that I worked really hard to get my brain and left leg talking to one another again. Sadly my left arm, wrist, hand and fingers have decided not to listen to the brain very much and my brain has now become disconnected from the limb in such a way that I don't really know where it is most of the time. It's like an alien part of me. Hence my reasons for wanting to have the tattoo starting from the shoulder blade and going round onto the arm itself. I needed to be reconnected in a more visual way. It has helped a bit, but once the whole arm is done I think it will be much better.

Of course, seeing it is still not the same as feeling it. Last night for example, I was aware of pain in my left arm (a constant thing because the muscles are spastic - hypertonic - much of the time) but I had no idea where my arm was. I went to where I thought it was (by my side as I sat reading in bed) and I was horrified to find only the bedding. I literally had to put my book down to look for my arm. It was stuck between the bed and the chest of drawers. It was highly comical, but also totally unnerving. For a split second I thought my arm had actually fallen off. It was so lifeless and alien to me.

I'm not fishing for sympathy or compliments. I'm writing for myself. I'm writing to remind myself of just one set of horrific traumas I have survived and come through. I am writing this now before my brain forgets tomorrow what I remembered today: that a stroke is a devastating thing. I died during the surgery. I survived the surgery. But more than the physical death, part of my ability to recognize me died when those millions of neurons, synapses and seven miles of axons were expunged. That is a scary thought. I'm glad it's just my arm I do not recognize. What if I looked in a mirror and had no idea who the face staring back was?

People, including, sadly, medics, assume that because I can walk and talk there are no lasting effects of this 'surgical complication'. Every day is a struggle. Every day is a battle. Some days I can barely scrape the energy together to make a cup of tea. Some days I can go for a walk. Some days I just have to sleep. Some days I have no words at all. Losing words is terrifying to me.

Each week I go to my therapist as we unpick 40+ years of immense trauma and I sit there and feel like I have nothing to talk about. 50 minutes later I drive home wondering how we got to discussing whatever thought that struck me in so much detail. Each week is like another resurrection of a piece of myself. PTSD, anxiety, panic and agoraphobia might be where I'm at right now, but I am not going to be 'here' forever...

Every day my head is full of noise, a Calliopean claustrophobia of negative thoughts, lies and nonsense that wants to hiss and wheeze like Stoddard's steam instrument and drown out my own Spirit's voice. But my Spirit IS louder and stronger than all of that bluster and wheeze. I am STILL here. I have risen from the dead. I shall continue to rise from the dead until every ounce of my self and my purpose here, however insignificant it or I may look to those who cannot see, has been used up. Not before.

Today I might well be afraid to leave my house, but I am fighting a battle inside and winning.