Story of girl who wanted to live forever reminds us how we abuse most precious gift of them all
Tragic teen's simple joy at being alive should make everyone rage against the dying of the light, says Gail Walker
The case of "JS", the teenage girl who died from cancer on October 17 this year, winning a landmark case at the High Court in her final days so that she could be cryogenically frozen in the hope that she can be "woken up" and cured in the distant future, is profoundly troubling.
Not about the ethical whys and wherefores of the case. Or, indeed, about whether cryogenics is a viable science, or simply a big con. Not even as regards the conflict between JS's divorced parents, who had disagreed over her wishes - her mother supported her daughter's decision to put her hope in science, while her dad opposed the move.
No. What is most disturbing of all is the simple idea of a 14-year-old child facing alone into the ultimate darkness.
Who can blame her in putting every last hope in what many of us would regard as the hinterlands of science fiction if it gave her the chance to enjoy once more the very fact of living. Of seeing. Of breathing. Of moving from moment to moment.
JS merely wanted what we take largely for granted. So much so that she would be prepared to wait goodness knows how long (if ever) to be "awoken" to a - by definition - totally different world.
A world 200 years in the future, where she would be without family, or friends. A world where she would have to make her own way. But, still, a world where so much that was still upstream to this teenager when she passed away would suddenly be on the far horizon again.
Though too ill to attend court, she wrote: "I think being cryo-preserved gives me a chance to be cured and woken up, even in hundreds of years' time. I don't want to be buried underground. I want to live and live longer and I think that in the future they might find a cure for my cancer and wake me up".
It would be tempting to be dismissive at this point, to identify in those words the absence of a real grasp of reality. As the old saying goes, all that would be as easy as taking candy from a child.
But it is hard not to recognise in JS's words the perfect hope and the pure heart of a child.
JS reminds us how much we abuse the most precious gift given to us. All those hours of our lives spent in a strange state of deferment: another year, another job, another promotion, a second house, one more something and, then, we will be happy.
While the "now" is something to be charted, negotiated, endured.
Most of us live our lives that way. Waiting.
And yet for all of that, we cling on to life with a vice-like grip. Let's be honest, if we thought cryogenics could work in a perfectly normal sense - that we would be reanimated, patched up and continue just as we were first time around - most of us would grab at the chance.
Ah, the things we'd do differently next time round. The second chances we would take. The witty and wise things we'd say.
Deep down, we echo the Woody Allen joke: "I don't want to achieve immortality through my work; I want to achieve immortality through not dying. I don't want to live on in the hearts of my countrymen; I want to live on in my apartment." Flippant? Perhaps. But also revealing the simplest truth of all - we don't want to die.
Yet still we seek order, sense and reason despite the arbitrariness of life and death. We know that children shouldn't die at 14 and that the world is out of kilter if sons and daughters pass away before parents, or even if Darby survives Joan. It's just not fair.
When parents are robbed of a child, neither faith nor reason provides much by way of comfort. Neither has an explanation that takes away any of the horror, or the despair.
We never knew this girl whose circumstances changed so swiftly. She was diagnosed in 2015 and told in August 2016 that doctors could do no more for her. And now we will never know her.
But there is much commonality in our experience of life: love, laughter, feeling the autumn breeze or the summer sun on our skin. Just waking up in the morning and facing the day with anticipation.
And those more particular experiences that all 14-year-old girls go through: the hopeless crushes and slightly mad obsessions - be they Emily Bronte, Kate Bush, Harry Styles, or paintings of horses. The desire to be cool, to be grown up, to be wise, to gain some independence, to fit in and to be noticed, or not to stand out, all at once.
JS felt these things - or something very much like them. And she felt them slipping away from her through no fault of her own. In our desire to shrink away from horror, to hide behind reason, or seek the comfort of tradition, we tend to blot out the particular.
But it was the particular that made this young girl want to hang on to life, to outface death almost. She loved not just "life" in the abstract, but her own life in the real, unique but beautiful detailing of the life she knew.
All those feelings, all those memories, all those thoughts, imaginings and dreams - why should death have them in some kind of pointless cruelty?
Moral philosophers and scientists will have their way and legal arguments will continue to be played out in the Press and on the airwaves. And on the other side of the Atlantic, the body of a 14-year-old girl hangs suspended in liquid nitrogen in a 10ft-high vat in a nondescript building on an industrial estate in Detroit.
But we should never lose sight of a teenager who loved her life and told us so as loudly as possible in the only way she knew. Yes, we should be empathetic and feel saddened, but we should also remember JS's delightful joy and wonder of just being alive and reflect on how in our own ways we should rage against the dying of the light.