A favourite quote and a way by which to approach life.

Today is the tomorrow that you worried about yesterday.

Saturday, 24 November 2007


I've always had asthma, having had my first attack when I was 3 months old, but over the years it's got worse. As a teenager I was active and sporty, enjoying swimming and trampolining in particular, and as a young adult progressing quickly through the grades in karate to become an instructor. These days there are times when I can barely make it through from my bedroom to the bathroom (they're next to each other) without getting breathless. This isn't how I imagined my life would turn out.

I remember one day at primary school when I was 10 being set an exercise of writing what we expected to be doing with our lives in 10 years time. I sat for the duration of the lesson staring at the title on the top of the page, unable to write anything, because at that age 10 years was the whole of my life again and an almost inconceivable prospect of time ahead. Others around me wrote of being astronauts or famous actors/actresses, or other such celebrities, but I was thinking realistically and knew that these dreams were most unlikely to come to anything (as far as I'm aware, I was right). I wanted to be realistic in my answer, but the reality was that I didn't have a clue where life would have me by the age of 20, which is why the page stayed blank. I remember being deeply upset that I couldn't complete the exercise or let myself be free enough to write about some pipe-dream that I knew would be fantasy but would at least fill the page. I remember going home and telling my mother about this disaster of the day, and her being troubled that I couldn't imagine my life 10 years from then. It wasn't that I couldn't imagine being alive, it was the sheer time-scale that daunted me, because even then I lived life in pockets of moments, rather than a vast expanse of endlessness. That's not to say that I didn't have dreams and aspirations - I did - but they tended to be set in some almost unreal time ahead of me that I'd happen upon 'when I was older'. As all children do, I thought about the future, about what I'd do when I 'grew up', I dreamt of what job I'd have, whether or not I'd have children of my own, and how life might be. It never occured to me that life would turn out as it has, with me unable to work because of my asthma and spending vast amounts of time in hospital because of it. Looking through my 2007 diary yesterday I counted that I've spent 83 days in hospital this year (so far), which is practically a quarter of the year!

One of the consequences of living a life like this is that it makes it very difficult for those around you to relate to much of your life. My friends are wonderful, accepting me for who I am and the kind of weird life I have, but I'm very aware that this is no ordinary way of life, and many of the experiences I have had are beyond those of many. It could also be said that a more ordinary way of life is alien to me, and whilst I've had glimpses into the world of work and finanacial independence (not dependent on state benefits of one kind or another), they've been brief and are now in the distant past. The more usual way of adult life is almost as strange and unfathomable to me as the life I lead must be to many others. For the most part I tend not to think about these things as it can get a little depressing to always be considering one's differences, but every so often it hits me.

I was at a small party at a friend's house last night, which was an altogether lovely evening, though I found myself contemplative when I got home, because I suddenly felt very different ... I felt boring. This isn't anything to do with how anyone else made me feel, or anything that anyone said. Indeed, nobody said anything other than how lovely it was to see me out of hospital again and back on my feet. But that's the point, I am always in hospital. My experience is illness, hospital, recuperation, illness, hospital, recuperation etc, etc. Although I know that I do talk about many other things, I inevitably also talk a lot about my experiences in life, which happen to be hospital-/illness-/medical-based, and whilst I know it's normal to talk about one's experiences, it's not normal for them to be of this nature. Not only is it not normal, but I think it's also quite challenging for others to be confronted with such experiences - mine and others. Who, after all, wants to think about mortality? Who wants to consider life as a human pin cushion (all those needles in hospital)? Who wants to think about life-threatening illness? Who wants to think about disability? Who wants to think about how different life might be for them if they lived as I do? Don't get me wrong, I'm not sitting here now thinking 'woe is me!' No, I just feel different ... and I feel left behind ... and yes, I feel as though I'm missing out, and I guess I'm slightly shocked that this is how things have turned out to be. On the other hand, as weird as this might sound, life has been like this for so long now that I think I'd have a hard time adjusting to a more normal way of life if my asthma was suddenly cured. It would be amazing and exciting and wonderful, but I think I'd hardly know how to live, because 'normal life' has been beyond the realms of my experience for many, many years.


Anonymous said...

Hey babe

Just wanted you to know that I'm thinking of you in your contemplatative mood. You're not boring btw. You're wise, understanding and totally crazy all at the same time. We all love you :)

isis xxx

Emily H said...

What a beautifully written, thoughtful piece, Becky. You sum up that feeling of being outside of normal life very well. For me, life is on hold, the brakes are on, I'm in limbo.

I have always planned my life to the nth degree, knowing where I would be in one year, five, ten. Not being able to plan any more, not knowing, living life without a road map, is one of the most frightening aspects of this horrible disease, for me.

I can see, though, that for some that freedom is exhilarating, exciting, challenging, and that they would hate to have their lives planned in the way I liked mine to be. If we can learn anything from this condition, maybe we can learn to be challenged and pushed forward by the 'not knowing', rather than frightened by it.

Take care, honey, and keep blogging,

Love Em (H)