There is something about being chronically ill that totally changes your values and views on life, your insight to what life is and how to live it. I know I am not the only person you has spotted this in themselves, as I have talked on Twitter to a few who also feel it. It isn’t that many years ago when I like many others worked every hour I could and I was a loyal and committed worker from myself employed days right through to my final job I gave my all. Everything in my life had to be done at a thousand miles an hour and nothing short of perfect was good enough. My appearance, my work, my home, my projected self, all had to be spot on, if it wasn’t then I had to work harder. I dreamed like many of winning the lottery and what it could bring to my life in the ways of luxury, not big houses and holidays and clothes, I’ve never been that type of person, but in cleaners and cooks to help make things even more perfect. I had like most become disconnected to what was really important and the world outside of a TV program that I watched whilst working on other things. I was reasonably average and settled into a grove where I had been put rather than had chosen. Over the years since I health impacted more then the odd flare, from when my MS turned progressive and I started loosing control of perfection, my entire views of everything started to change.
It isn’t as some might think just a case that I have suddenly realised how important health is, due to my flares I was well aware of that already, no it was more basic than that to begin with, I was suddenly aware of my own vulnerability to death. I knew like everyone that I wasn’t going to live for ever, but I had though that I would have had time to live before it happened. I did at first deny that MS was impacting me as I was superwoman and I was going to go on as before and more so. I wasn’t going to be beaten down and I wasn’t going to be those people I saw curled in a wheelchair. Denial is a dangerous place and it made adapting a harder process than it could have been. I did slowly start reassessing, not knowingly, I see it now that I gradually was changing and it wasn’t until quite recently that I realised just how much I had changed and what it was that was making me change.
It isn’t your own mortality that is the driver as I had thought, it is the process of getting there and how it will play out that changes your values, the time to live, not really, it is more how to live that time. When you know that you are slowly regardless of any medical intervention closing down, bit by bit your body is forgetting how to do things, it is supposed to do without help, then everything is changed. When you know that everyday of your life short or long is going to be spent in pain, then what is important changes. When you know that one day you will be trapped in a body that won’t even do the simple acts of living without help, the world changes. How does it change? Well, I have always been good at forgiving, some people have done things to me that others think I should want to see them dead for, I never felt that way, I feel it even less now, now I hope they have long good lives, not just forgiven, but forgiven with bells on. I no longer have to have things perfect, I see now perfect is impossible, I am happy they just are, if perfect that is a joyous thing to celebrate, but not vital to make them so.
Knowing that tomorrow I could wake and be unable to walk makes me no matter how painful glad at every step I take, when did you last just enjoy walking through your home? Each meal I eat without choking, each drink I take without drowning, each glass I lift to my lips by myself are all joys. Oh yes, there is a pain when you try and can’t. Every few minutes that I can sit without having to move again as tears are forming at the pain, they are joys, slipping quietly into sleep is a joy as is waking each day not sure how to get out of it, getting out is a joy. I no longer takes something amazing to happen or to be given a wonderful gift because everything is amazing and everything is a gift. I wasted so much of my life missing all of this, not realising that these are the important things, not fancy houses, not the wardrobe full of cloths or cars and holidays, not having your boss telling you, you did a good job, all nice, but not as wonderful as having the movement to do that job.
Everything changes and my dearest wish, would be for you to see these joys, but without all the trauma it has taken for me to find it.