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December 16, 2012 / Kate Gross

The King James Bible, and why it matters

2005, or thereabouts. It’s a Monday night. Tomorrow the PM is going to appear before the Parliamentary Liaison Committee. I am pouring over the briefing folder I have prepared for him and thinking about the NHS. It’s not my specialist subject (being more of an expert in the gloomy business of home affairs). But I am intrigued by a briefing by Professor Julian le Grand, known to the young pranksters of Downing St as Julian the Big. It’s about the rationale for introducing choice in the NHS – an important chunk of TB’s 2nd term public service reform plans. I thought it sounded like a good idea. But I hadn’t interacted with the NHS for much more than a broken toe at that stage, so it was all theoretical.

Now I get it. I am beginning to understand that there isn’t a right answer in medicine. In my useless student-of-literature world, words, history, even facts are mutable and subject to interpretation. I expected more of Science. I expected black and white, a single standard of treatment that is unequivocally the right thing to do. But I misunderstood this foreign beast. Science seems to me to be a perpetual work in progress, a best guess at any one time, based on the sum of human knowledge. And at any one time, we only know so much. Now, different people have different approaches to treatment, to surgery, to everything. And since the Nuisance finally decided it was time to make its presence known, we have been engaged in a quest to master it with our own knowledge. To seek opinions. To understand statistics (which never mean what you think). And to make choices.

I’ve written about living with uncertainty. My mum described it the other day as walking along the edge of a precipice, each tiny step edging us to a place of greater safety, but with the risk of tumbling over at any point. But the problem is you never know what safety looks like. It doesn’t have a sign on it saying “this way, to avoid the end of the world”. So we have to decide. Decide what chemo regime. Decide whether to go on a clinical trial or not. Decide what surgical approach to take (if we make it there). Decide where and with whom to do all this (because chemistry matters with people as well as with tumours, and because we have the incredible fortune to be able to seek treatment in super-size-me land as well as home). And all this deciding is hard, because the stakes are so high and our knowledge so incomplete. And because I am grasping for certainty, for normal, for routine in all of this and with every week seems to come a different view to research and explore, and with it another impossible dilemma. I say “we”, but really Billy is leading the expedition and I am his humble bag-carrier. He can read the map and understands the local language when we need to stop and ask for directions. He stays clear-headed & strong when I feel like pulling a Captain Oates, and has assembled a remarkable advisory team from around the world who are helping us navigate this uncharted territory.

So what would I say to Julian the Big about choice now, now that I know all this? That it is a gift. That it returns agency when disease has taken it away. But that it isn’t easy to live with. That it is hard-going intellectually, even if one of the co-choosers is a bona fide science genius like Billy. That it offers highs and lows. That it makes you want stuff, rationally or irrationally, because more knowledge leaves an impression that somewhere, that sign to avoid the end of the world is just there. That making choices requires really painful trade-offs (hair or no hair? Public or private? Near or far from home?) But now, if I had the choice to have choice or not? Of course I would have it. To go back to the weighty historical tome which is becoming the backdrop to all this, it’s the difference between having the Bible read to you in a language you don’t understand, and owning the book, reading the words yourself in your own tongue. For me, at least, it is the right answer.

3 Comments

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  1. Sasha Howard / Dec 17 2012 9:46 am

    Lovely Kate – on the theme of precipices and Bibles, my Dad used to quote from the sayings of the fathers “life is a narrow bridge, the important thing is not to be afraid”.

    And also “the day is short, and the task is great; it is not for us to finish the work, nor are we free to desist from it “.

    I love both for they contain no sickly-sweet ‘it will all be alright’ messages, but seem to sum-up how terrifying and wonderful life can be.

    Sending you and Billy & the boys all our love. Sashxx

  2. Serah / Jan 2 2013 7:52 am

    Very profound piece. Choice is truly a gift. I pray for guidance for Billy and his bag carrier.

  3. Peter Kyle / Jan 4 2013 10:31 am

    So good to be reminded that ‘choice’ in health is both empowering and scary and that it is possible to both of those things yet it still be the right way forward. Also, you make an important point about the different factors that come to play when people reach to the point of exercising choice, such as distance from home. I discussed choice with my mum recently and that was the first thing she mentioned. To people who are lucky enough, like me, not to be battling illness, it’s easy to overlook the huge importance that seemingly insignificant factors like that have at such a tough time.

    Thanks for blogging, I really look forward to reading it

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