If you’ve explored the FAQ page, you will have seen I was (am) grateful to have avoided both epilepsy and Locked-In Syndrome. Epilepsy is a possible side-effect of strokes, but would’ve likely transpired during the first 14 days. Locked-in syndrome would have been immediate as the wrong stroke hit.
As it’s name suggests, Locked-In Syndrome happens when your brain feels like it works fine, but you can’t move anything except your eyes. You may have heard of the book, The Diving Bell and the Butterfly, by journalist Jean-Dominique Bauby. Wikipedia says, “it describes what his life is like after suffering a massive stroke that left him with a condition called locked-in syndrome. It also details what his life was like before the stroke.” His secretary would recite the alphabet the order of the frequency each letter is used and he would blink when she got to the correct one, and translate it into words. It only took ten months to write (how, I have no idea) but Bauby died two days after publication, never knowing that he sold 150,000 copies in the first week. It’s a film now too.
It reminded me of a couple of things, one which I feel like I should probably state publicly enough so that people know. If something like that happened to me, please let me go. I like living; I enjoy it a lot. I think I could deal with quite a lot of things if I have to, including a wheelchair or whatever. But if quality of life is minimal or torturous, and I’m not able to communicate the decision for myself; please make sure everyone knows its ok to let me go. I like living, and dying is what happens when we’re done with that; I’ve no desire to be trapped in no mans land in the interim. Just so you know. It’s in print now. I hope you never need remember this, but it is here. In black and white. (Unless I change the blog theme again, in which case who knows what colour this is right now!)
There have been a couple of discussions that I’ve had a couple of times recently with people brave enough to ask, like what death is all about. But there’s one thing I come back to thinking about with more relative frequency than I’ve done before: I think we preserve too many lives.
I do think this. And I haven’t changed my mind. And it bothers me that I haven’t changed my mind. But I haven’t. Death is what actually happens to us all after we stop living. In other times and in other places, death is normal, it’s what happens to people, but here in the Western world we are so set on preventing it that it’s become something that I don’t think it is supposed to be: unusual, shocking, unexplainable. On an individual level, with anyone I love, anyone I know, anyone my friends love and know, of course I want everyone to survive everything, because you are known and loved and its important to everyone we are with them. On an individual level of course everyone is important and needs to be saved. But the bigger picture, I believe, is very different. We preserve life at almost any cost we can manage. In some cases we ‘save’ people only for them to suffer more – and possibly with others – later. We make death out to be truly the worst thing. No matter what you believe (or don’t believe) as none of us have done it, who are we to suggest that is the case? Really? How arrogant can we be? Or is it more that we are scared of being left behind to cope without them?
I know this will come across wrongly in the eyes of some. Possibly because I haven’t said what I mean in an elegant enough fashion for it to be well understood, possibly because you simply disagree and think we should save most people at all costs.
I’m aware that I am alive because someone discovered heparin, followed by Clexane and Warfarin, would make that possible. I am grateful to them, I really am. But as I don’t believe death is an abnormal part of life, I don’t think I’d be angry if they had not. (Ignore the obvious issue with this point, and try to catch my drift!) I know I have the luxury of being able to say this as someone who is not a single parent, and is not solely responsible for other lives, and I know that would make a radical difference to what I felt for me personally, but it does not change the bigger picture for me.
We ‘save’ too many people. The natural order says that more of us should die more often. Mess with the natural order and, eventually, I believe, nature/God/science/karma (delete to taste) bites back. Don’t get me wrong, I wouldn’t advocate stopping research or anything, but I do wonder why that is. It seems like a contradiction in my own mind. But how far do we take it? If its not ok to die, what happens when we can all live forever? When do we shift from pension crises and overcrowding and one-baby-in-China policies to proper global crises?
And when did we stop accepting death as part of life?
I’m torn. I know this is what I believe. I also know there are people I would fight quite literally to the death to ensure they are saved. But I don’t believe I am right to be able to do this, and in some cases to want to do this. We should be better at accepting death as part of life.
I’d genuinely love to know what you think. I know its probably different and you may not like my point of view. That’s ok with me: I’d be grateful if you just don’t hold my own thoughts against me, and allow me the grace to change my mind if someone persuades me to do so (I am a woman after all, it is my perogative!). Find the Leave a Comment button and let me know; you can do it anonymously if you prefer, just pick a name you like. Not everyone things like me… if you can bear the Mail, look here and here and here at stories of others.
But for now, if I’m stuck in something like Locked-In Syndrome, without anyone medical being hopeful that I’d be back – properly back – any time soon, please let me go.