09/02/2024
I know you think I rant on about the stupidity of politicians, my loathing of all intolerance, my obsession with the self-righteous, the faux-moral grandstanders and anyone who believes that being able to say the word diverse means they are entitled to the riches of heaven.
Today, however, is different because, like every one of us on a vastly accurate level, I have a dying friend. Please don’t click me away because this won’t take long. I’m not asking for money, and I do think it is important that you know about my mate Charles Sabine and why his dying is just a little more important.
I have known Charles since he was 19 and at university, where he got a double first in Louche, with supplementary modules in drinking and recreational drugs. We drank, skied, raced, and dined together and once shared a house in Shepherds Bush with Douglas and his wife Fiona. She thought all the men under her roof were tossers, perhaps not unrelated to Charlie’s 247 Rake’s Progress - a lifestyle that pre-destined him to become a journalist.
Inevitably, Charlie, with the charmed existence of the seemingly lazy and hugely talented, was very good, so NBC hired him because the Americans have always paid top dollar to stick Non-Yanks in the front line of war zones (thus avoiding diplomatic incidents over dead US hacks). At NBC, he became an Emmy-winning producer, journalist and presenter. He married and divorced - as is the generic way of all top front-line hacks - repeated the process and had children. But somewhere around the time, when Al-Quaeda su***de bombs detonated by his Baghdad hotel bedroom and an IED killed his sound man, and he almost went permanently totally deaf, Charles lost his brother John after a dreadful and unwinnable fight with Huntington’s Disease.
All Charlie’s mates knew John when he was entirely complete, intellectually aloof, charming, kind and glowing with integrity. When he was on his irreversible rise to the highest Courts in the land as a Denning, Hale or Blackstone. Huntington’s Disease removed all that and did it so inexorably and so slowly that at first you just thought he was drunk, and then a bit dotty and then … but by then the wheels started to come off, and the burden to his wife and children and mother and Charles was immeasurable. And still, none of us, Charlie’s mates, knew the half.
Because HD is a disease that keeps on giving, it is inherited and passed on from generation to generation. So it turned out that just after the explosions outside the hotel bedroom, a blood test told Charlie that he had no more lucky escapes left and that one day he would start to shake and stumble, to slur and lose motor function. He would have difficulty speaking clearly, there would be no more communication, but there would be problems with swallowing, personality changes, and breathing issues.
No... it gets worse.
Imagine if you have Parkinson's mixed with MS, with a dollop of MND, exacerbated with Alzheimer's and added Schizophrenia, all on an agonisingly slow fuse. Then, you care for your husband, daughter, father, and mate and are also aware that this rogue gene has already been disseminated, shared, and spread.
Now imagine that around the world, vast numbers of sufferers have no idea about the genetic coding, the inheritance factor, or the prognosis and instead - truly - hide the fact because they are embarrassed by the stigma. Or they do know and are embarrassed by the advice not to breed. Or they live somewhere where people of science still advise not touching sufferers because they might pass it on.
These are not indigenous tribes unaware of Arsenal or the internet. These people live in a world that says of their HD brother, “Look at him - he’s just an old drunk, can hardly stand straight these days, burbling away”. “What’s wrong with her? Never bred, what’s she gonna do when she’s old?” My Mum says you’re dirty and I’m not to play with you, cos you’re diseased.”
Since that blood test told Charlie the game was up, he has, instead of being diminished by the imminence of disaster, become a rebel with a cause, taking up the HD baton on behalf of sufferers and families everywhere - uniting them all under the banner HIDDEN NO MORE. He has begged, cajoled, and persuaded the finest scientific and medical minds and biggest Pharmas to join him in his crusade. He has got the Pope to explain to billions of Catholics that they will be seen. That they are HIDDEN NO MORE. My very visible mate Charlie has given impetus and possibly even a lifeline to the next generation of HD sufferers. He needs more mates, though, to help him battle on. The first thing I want you to do is this.
I want you to watch a TED film - which is thirteen minutes long - and has Charlie bringing people up to date with some of the possibilities. You can do it now or tonight or over breakfast, but do it - and then, if you like it, say so and tell your mates, and ask them. It’s not much, and I’ll bet once you've seen it, you'll want to find out more and then you’ll want to become one of Charlie’s mates too because, if nothing else, Charlie is Hidden No More and none of the vast and growing HD family should be.
Charlie’s Foundation is https://www.hiddennomore.com/
Watch the Film on YouTube Here: https://youtu.be/RsUfCKfyQYY.
