Pacific Coast

This morning, waking up with the same headache I went to sleep with, I realised that my body thought it might be a good idea to start fighting whatever it is fighting against.  Science is struggling big at the moment to come to terms with what IT is,  which you will know if you followed the news about CFIDS/CFS/ME lately. What “IT” is, how to track it down (or how not to) is subject of a heated debate all over the internet, but not here. I’m just saying that IT shares my life (and it’s not a welcome guest) and somehow IT and I need to live with each other.  –

I told my body that this would not be the ideal time to kick off a fight (actually, I don’t think that there is an ideal time for that – ever). And then, turning to the internet to distract myself from feeling sorry for myself, I saw the long expected news about the vision behind Apple. How did this creep up into the post? Well, it is the vision part that features in it. That part where you have to find out what you’re passionate about and do it. This is all well and good for healthy people  – belonging to the other part of the (lack of) health world, the dark side if you want to speak in Star Wars terms – what do I have to offer? But the truth is: it’s not easy for anyone and being healthy is not a requirement for following a vision. In fact many visionaries were far from being healthy, and with the wisdom of hindsight it is easy to look at other peoples’ lives and judge how easy it was for them. However, we were not there to see them struggle at times of decisions or fight with set-backs. We were not with them to see how hard things were, we only saw the achievement. And very few people achieve big things and leave a massive footprint behind.

I have been thinking about this for days, in fact ever since a friend wrote to me saying “all I want to do is feel useful to someone somewhere” (and you have been useful to me, kicking this process into life). I do very much relate to this feeling. How can we – the non-healthy part of the world – feel useful? How can we be a valuable part of society, how can we follow a vision when all we do is – on a normal standard scale – well, being sick. Who is going to determine what makes people useful? Is this inventing a computer or being the ambassador of a religion or creating a painting or writing a piece of music or finding a new type of cells in the body? This, of course, has the potential to massively influence people. But what if we start out smaller? Does it not require vision to drag oneself out of bed or listen to people, to be the best person we can possibly aspire to become? Admittedly, it’s easy to look down on achievements like “getting out of bed” or “leaving the house” as, for most people, these are a given, but there are people who can’t do that. There was a time I wasn’t able to achieve that. On those days, my achievement for the day was to smile. That way I would at least be a prettier sight to look at. (Side note to my parents who read this: don’t you dare to cry now!)

This is the part of “Don’t be trapped by dogma — which is living with the results of other people’s thinking” comes into play. Who is going to determine if what you have done is an achievement? No one else than yourself, and your loved ones, as they know about your struggle(s). This is the most difficult part of all, because we want people to see that we have achieved something, and sometimes (or even most of the time) they can’t see it or they simply don’t even want to give it a try. This is the frustrating part – to say the least.

Part of my recent work was thinking about and dealing with what wellbeing means. It never dawned on me that a word we use every day, and of which surely everyone knowns the meaning (otherwise, why would we use it?), has to be precisely defined – and there, you see, I am a musician at heart not a scientist. It appeared that wellbeing is shaped by a multitude of factors and – now comes the interesting part – needs to be re-defined at various points in life.  And there it is again: We need to define what makes us happy. If we stretch ourselves too far, we won’t achieve that. And I plead guilty of having allowed other people – who did not have my best interest in mind even though they might say they did – to determine what I can achieve and gave them the power to put me down… and not even that long ago. In fact, I had nightmares for days and I still hear the little voice in my head saying “failure” – for having been unable to leave the house. (Actually, I imagine it more like a gnome sitting on my shoulder telling me that, one should at least have a vivid imagination for those things…)

If we’re honest with ourselves we will know if we have achieved a goal. We will also strive to be realistic enough to not set the goal or vision too high, or if it is a very high goal, break it into smaller steps that we actually can achieve. Or maybe it’ll change, or we have to change it because of life circumstances (presenting a science poster at this stage of my life did not feature in my original vision), but we will reach for our vision. We do this because we know we might not reach the entire world, but we will make a difference in our part of the world, to our friends and loved ones and, ultimately, this will make the world a better place to live in.


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