A condition which I am reluctant to call a disease until it has been clearly identified as such or better defined.
Terry Pratchett is also determined to write about his experiences with or within the condition, for as long as he can, and as always, he has been very lucid and open about how the condition manifests itself and affects his life.
He is also not alone in raging against the debilitating condition and the difficulty in finding an effective treatment for it or an approach to avoiding the onset of the condition in the first place, if possible.
…it is strange that a disease that attracts so much attention, awe, fear and superstition is so underfunded in treatment and research. We don't know what causes it, and as far as we know the only way to be sure of not developing it is to die young. Regular exercise and eating sensibly are a good idea, but they don't come with any guarantees. There is no cure. Researchers are talking about the possibility of a whole palette of treatments or regimes to help those people with dementia to live active and satisfying lives, with the disease kept in reasonably permanent check in very much the same way as treatments now exist for HIV. Not so much a cure therefore as - we hope - a permanent reprieve. We hope it will come quickly, and be affordable.
When my father was in his terminal year, I discussed death with him. I recall very clearly his relief that the cancer that was taking him was at least allowing him "all his marbles". Dementia in its varied forms is not like cancer. Dad saw the cancer in his pancreas as an invader but Alzheimer's is a slow unwinding of me, losing trust in myself, a butt of my own jokes and on bad days capable of playing hunt the slipper by myself and losing.
Another appropriate quote is taken from Pratchett's Unseen Academicals has Havelock Vetinari speaking terry's own words about natural evil.
I have told this to few people, gentlemen, and I suspect never will again, but one day when I was a young boy on holiday in Uberwald I was walking along the bank of a stream when I saw a mother otter with her cubs. A very endearing sight, I'm sure you will agree, and even as I watched, the mother otter dived into the water and came up with a plump salmon, which she subdued and dragged on to a half-submerged log. As she ate it, while of course it was still alive, the body split and I remember to this day the sweet pinkness of its roes as they spilled out, much to the delight of the baby otters who scrambled over themselves to feed on the delicacy. One of nature's wonders, gentlemen: mother and children dining upon mother and children. And that's when I first learned about evil. It is built in to the very nature of the universe. Every world spins in pain. If there is any kind of supreme being, I told myself, it is up to all of us to become his moral superior.
A call to rise above the casual cruelty of nature. Terry Pratchett has been afflicted with a disease which has, currently no known cause or cure. It is a condition that is slowly destroying his 'mind' and/or his current view of himself.
Perhaps the greatest fear of all, is that we lose the very intimate recollection of who we are because our perception of 'self' is all we have to identify ourselves as individuals and thus, separate ourselves from a collective entity.
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