Monday, 18 August 2014

The new normal

It's an interesting one, this. I have been pondering the way people view me now I'm chronically ill and classed as disabled. There are many misconceptions about us spoonie types and even those closest to us struggle to see the person behind the illness. Of my healthy friends and family, I have noticed three types of stock reaction to me and my situation. Some simply haven't been able to cope at all. It is incomprehensible to them that I can be so ill and yet receive no support. It scares them, understandably so because it IS scary, and the only way they can deal with me is through denial. The shutters come down, the backs get turned and I am placed out of sight and out of mind. By ignoring me and my M.E. the problem goes away and they can continue on with their lives, free from guilt and the helplessness that comes from watching someone suffer and knowing there is nothing you can do for them. I don't begrudge these people. It's sad for me but I don't take it personally. I realise to my shame that it's likely the healthy me would have reacted the same. I like to think I know better now.

Conversely, there are those that have tried their best to understand what I am going through. They may have struggled at first but their sheer determination to be there for me when I need them most has enabled them to come to terms with what M.E. has done to me. Much as I have accepted my new life, they have too, adapting with me to cater for my new needs and limitations yet at the same time treating me as the same person I was before I got ill. They are able to sit and chat, laugh, and have fun with me, seeing beyond the physical changes to the person underneath. I haven't had a radical personality swap. I like the same things, loathe the same things, still make silly jokes, and actually I find I laugh more these days. Well, you've got to really haven't you? I am eternally grateful to the small, loyal few who have stood by me. I know it has been just as hard for them, even if for obviously different reasons.

The third and final archetype is the most tricky to deal with. They mean well and yet unwittingly cause me much rolling of eyes and harumphing. They just don't seem to know what to do with me. It's as if they wish they could stick their fingers in their ears and pretend none of this is happening but for whatever reason (loyalty, guilt, sense of duty etc) they are unable to abandon me entirely. These are the people who make promises to visit but rarely keep to them, as if the promise itself is enough to assuage their feelings of responsibility. They are unable to get past the fact that I am ill and no longer see me as I truly am. They regard me with a mixture of shock, pity and fear, rather like they expect me to suddenly crumble in front of them and start wailing about how bad my life is. Poor Charlotte, I hear them think to themselves, how awful! Imagine living like that. She's so brave to keep smiling even though her life is so terrible. Their talk is always focused on what will happen when I am 'normal', this magical nirvana known as 'fully recovered'. They have the most wonderful ideas of what we can do together. It's touching, except that all of these ideas require some degree of wellness that I have not yet reached and may never achieve. Imagine when you're well enough to do this, they say, It'll be like old times! 

They don't seem to realise that all these wonderful possibilities are so far ahead of me it's downright discouraging. I don't want to wait until I'm well to have a good time - I want it now, I absolutely NEED it now! It is entirely possible to feel like crap every day and still lead a fulfilling and joyful existence. I should know because it is something I have been working towards for a long time now. 

I don't want to spend my time wishing I was 'normal', pining for what was or what could have been. I have been ill so long I can't remember what it's like, to be able to do whatever you want at a moment's notice, to not be in pain, to be able to walk further than a few paces, to be completely independent. I don't need pity or sympathy about this because it's a fact of my life that I can't change. It is no longer my normality. Having M.E. is now my 'normal' and I intend to make the best of it for as long as it may last. I choose to accept, to adapt, to bloody well enjoy! And by that I don't mean I enjoy being ill because having M.E. is horrible and devastating. I would do anything to get well and am doing what I can to improve my health to the best of my abilities. What I do mean is that by changing my expectations, by thinking about the world in a different light, it is possible to be happy. And I truly am happy, a lot happier than I was before I got ill if I'm really honest. 

I have learnt so much about myself in the last three years. I have found support and friendship in the most unlikely of places. I know beyond doubt how much the people who love me really DO love me. I understand the true meaning and value of life now in a way I never would had my life not changed beyond all recognition. I am excited for the future - it seems full of endless possibilities and adventures rather than the endless years of teaching I had ahead of me until I reached retirement age.

So please don't pity me. I don't need it. Save it for yourselves or best of all, do away with it entirely. I'm not the one who has to get up early and go to work every day. I don't have the school run to organise, or endless after-school clubs. It doesn't matter what I look like, what I choose to wear. I don't desire the latest fashions, I'm not bothered by which films are a 'must-see' or who the cool bands are these days. Popular culture largely passes me by and it's a freeing feeling. These days my responsibilities boil down to feeding my body, trying not to push myself further than I can physically cope with, and doing my best to remain positive and optimistic. Nothing more, nothing less, and actually it is a very nice way to be, to have no stresses or strains for the day-to-day nonsense that ultimately doesn't matter.

I spend my days resting and topping up my vitamin D levels. I fart about on the internet with my virtual friends, who I love as dearly as anyone I have actually met in real life. We make each other laugh and we help each other through the pain and suffering this illness causes. Without the friends inside my phone life would be far less colourful and I am grateful to have got to know such inspiring and downright awesome people. Most of all, I am grateful to have got to know myself again. I had lost my way in the effort to be 'normal'. The step back from life that I have been forced to take has helped me realise who I really am and what I want to be. For the first time in my life I have been able to share my writing and poetry with others. For the first time in my life I have the confidence to believe I can shape my future how I want. I am no longer afraid of failure, no longer afraid of success. I am ready to take on the world again but this time on my terms. If I could get my health back too that would be lovely, but if not I shall make the most of what I've got. I refuse to wait until I am 'normal' because for the first time in a long, long while I have remembered that being 'normal' was never the plan. I want to be extraordinary because 'normal' is what happens when you're all out of ideas. I've been there before and it made me ill. Why on earth would I want to go back there?

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