I've seen two totally different stories illustrating not dissimilar perspectives on chronic disease in the last week that I'd like to share with you.
The first is that of the fictional sociopath John Kramer, as shown in Saw II. If you're not familiar with this horror film franchise; it concerns a brilliant engineer, diagnosed with terminal cancer, who demonstrates to people how lucky they are not to be consumed by a fatal illness. He does this by imprisoning them with the promise of escape if they play his 'game' . Sometime this involves forcing the victims to mutilate themselves, sometimes it involves the victim having to do the right thing (forgiveness of others' sins, not giving into wrath for 2 hours). It's sick and twisted, but with a moral message.
The message of the films is be grateful you are to be experience the joys of life, rather than be consumed by the bitterness of your problems. Don't make it the knowledge of near-certain death that opens your eyes to what you are about to lose.
The second, very opposite perspective comes from an American teenager. I came across it when researching thyroid disease for a talk I'm doing. One university student asked another: What's it like having lupus? The second, knowing that the first has been told everything there is to know about the disease, takes a few moments to realise the question is not technical about the disease but emotional. What's it like to cope with a disease that rules your life?
She came up with the Spoon theory. Take a bunch of spoons, but know that everything you want to do will cost you a spoon. Get out of bed, that's a spoon. Go to work, that's a spoon. Soon enough you're running out of spoons, and you're not able to do anything at all. Take some medicine, maybe you'll get a spoon back; but there's many things in life you'll want to do with that spoon. Deny it or be resentful all you like; that won't get you the spoon you need to get something to eat at night.
Disease-free people don't have to work out whether their life-force is enough to do the basics of daily living, the theory explains. Often they waste their spoons.
Both tales are calls not to waste our lives with unimportant stuff.
Your life-force is running out.
