The Myth of the Dying Swan

Illness is usually portrayed in media and literature as being soporific – peaceful, if a bit grimy, mostly painted with linen and figures slipping in and out of sleep.  That follows through from the death of Little Nell right through to the clawing but strangely sanitised coverage of Jade Goody’s cancer.  Every movie you see ostensibly about AIDS or cancer in fact shies away from the grim monotonies of a long sickness, favouring weepy shots of pale thin actresses in nightgowns.  It speaks volumes about the squeamishness of the healthy and the general unwillingness to see sickness as it is.  Namely, graphic, painful, inconvenient, long-lasting, and emotional.

For years I’ve had people posit to me that I made-up or exaggerated my illnesses for the sake of giving myself a tragic backstory.  But here’s the thing: chronic illness is not just my backstory, it is also my future.

Today I feel like I’m going to vomit and I am breathless for no reason, and feel like my joints are being pulled out of their sockets.  I am not lying around in white nightgowns on a chaise longue with my hand to my head.  I am perpetually cold, I walk like an old woman and I will probably not live to be an old woman.  There is no sad acceptance about my illness, there is just anger, denial, optimism and fear.  Today is terrifying, I don’t think I could cope with a lifetime like this.  Please don’t let this be the rest of my life.  I can’t make myself accept it.  And frankly I don’t think most people could.

So we need to re-write illness.

There is a lot more about this I could probably say, but, ironically, I need to lie down because I’m in a lot of pain.

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