I have been feeling very sad recently.
I haven’t made many posts since I began this blog. When I began I wondered where it might lead me. The brief that I gave myself was about as wide as it could be. So far I’ve had fun with the subjects that I’ve used. However, I now find that it’s a useful medium for expressing something about which I feel deeply.
Early in the 20th Century something referred to as the ‘Serenity Prayer’ was written, for use when one finds oneself in unwelcome circumstances, it goes something like this, “God, grant to us the serenity of mind to accept that which cannot be changed; courage to change that which can be changed, and wisdom to know the one from the other”
At face value that prayer sounds sensible; look closer. In reality it is saying that there are there are things I am able to control and things over which I have no control. Bringing god into it doesn’t change anything. Something very similar appeared over 200 years earlier, in the collection of Mother Goose nursery rhymes:
For every ailment under the sun
There is a remedy, or there is none;
If there be one, try to find it;
If there be none, never mind it.
Being able to take positive action to make things better makes one feel good. Being helpless in the face of difficult, sometimes almost unbearable circumstances is appalling but that’s how things are. We can’t escape the arbitrariness of what nature delivers. Life just ain’t fair.
I have a close relative who is now in the advance stages of Alzheimer’s disease. I’ll call her Jennifer; it’s not her real name. Alzheimer’s is a cruel disease. It eventually robs the sufferer of their personality. The person we knew and loved has disappeared leaving a being unable to respond to the world around her. She was so full of life and sparkle. It is ironic that she was the one who regularly found a reason to bring the family together with a birthday celebration, an anniversary of some sort, always something to facilitate communication and interaction. Alzheimer’s has robbed her of that ability; it has taken away her life. It has robbed us, we who love her, of the person we knew. Jennifer has a family wracked with grief: a husband, daughters, grand-children, and soon a great-grandchild she will never know. She still lives, and so the ability to grieve her loss properly is impossible. Who knows how much of the person we once shared our life with is still functioning deep within her?
Alzheimer’s disease is no respecter of persons. Three years ago Sir Terence David John Pratchett, OBE, better known as Terry Pratchett the novelist, author of 47 novels, including the The Discworld series, received a diagnosis of Alzheimer’s disease. He's writing about it as long as he can and showed his courage in a two part documentary series, for the BBC, based on his illness.
It is a strange life when you “come out”. People get embarrassed, lower their voices, get lost for words. Fifty per cent of Britons think there is a stigma surrounding dementia but only 25% think there is still a stigma associated with cancer. It seems that when you have cancer you are a brave battler against the disease, but when you have Alzheimer's you are an old fart. That's how people see you. It makes you feel quite alone. It seems to me there's hardly one family in this country that is not touched by the disease somehow. But people don't talk about it because it is so frightening. I swear that people think that if they say the word they're summoning the demon. It used to be the same with cancer.
Terry Pratchett
. . . 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 good ideas, 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 me unwinding, losing trust in myself, a butt of my own jokes and on bad days capable of playing hunt the slipper by myself and losing.
You can't battle it, you can't be a plucky “survivor”. It just steals you from yourself. And I'm 60; that's supposed to be the new 40. The baby boomers are getting older, and will stay older for longer. And they will run right into the dementia firing range. How will a society cope?
One of Jennifer’s daughters wrote to me recently. Commenting on her mother’s plight, she said,
"I feel very privileged to have such a wonderful, loving mum who never put herself first once. She is still a beautiful person to me. ‘Beauty comes from within’, is something she always told me - she was so right.
She doesn't deserve any of what is happening but I can do sod all about it - and they say there's a loving god!”
If we’re looking for life to be fair we’re going to be disappointed. We’ll be equally disappointed if we look for a loving god, or any sort of supernatural being, to come to our aid. There is no evidence of such in the Universe.
But, life goes on.
Life is for living.
It behoves we who are able to awake each morning, alive and alert, to get on with living.
