Friday, 20 May 2016

Two lives? Not any more.

I read a post this morning by a fellow lupie about "getting frustrated about what you used to be able to do". While I long ago stopped doing this, it resonated strongly with me for the phrase "life seems to separate into the time “before” the incident and life “after” the incident."

This took me a very long time to get over. I used to say that I had had two lives. Worse, it felt like the first was the good and "proper" one, while the second was a bad, "wrong" one. For several years I hid all "evidence" of my "old life". For instance my old sports medals got put in a box under the bed. It was too painful to look at them.

But over time, this changed. My life now feels like a whole, albeit with a drastic life changing event at the start of adulthood. But it makes no more sense to say I had two lives than, say, for married couples to say they had two lives: pre and post marriage. They are just different stages of a varied colourful life with its ups and downs.

I won't say I don't get fed up about it. I always find the anniversary of the onset of my illness difficult. On the one hand I don't want to be ill. On the other hand I have been sick and disabled all my adult life. It has shaped who I am. So given the chance to go back and not become sick, would I do it? Perhaps not. It is confusing quite frankly.

What I would do given my current poor state of health is jump at the chance of an improvement. It doesn't even need to be a cure. I would just like to be well enough to go out and leave the house on a regular basis. Maybe even well enough to work again.

Anything else? I could take it or leave it. For instance I'm not that bothered about being able to walk or not. While access is still a nuisance, my wheelchairs would allow me to do most of what I want, if only my health would play ball.

But for all that I rarely think about cures or improvements.  I tend only to think about the things I can do right now. And if I do think back to my pre illness stage (or even my earlier less impairing stages of illness), I find they are not a source of frustration but one of joy. Those sports medals? They now hang on my bedroom wall and bring back a host of happy memories whenever I look at them.

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