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Living with an uncertain future

Tuesday 8th July 2014

You’re probably familiar with the scene: it’s 3pm on a Saturday but you’re in bed, with your laptop a bit too close to your face and held at the same 90-degree angle as your heavy head. But I didn’t expect to crash up against both my future and my past during a hungover viewing of Breaking Bad last weekend.

In a bid to apologise to his teenage son for getting into a punch-up, Walter White breaks into a moving speech. Turns out when Walt was six, his dad died of Huntington’s disease. “It destroys portions of the brain, affects muscle control, leads to dementia,” he says tersely. “A nasty disease. It’s genetic.”

For me, four seasons deep into a world I thought of as being entirely foreign to my own, it hit suddenly and uncomfortably close to home.

When I was seven, my dad gathered my three siblings and I in the kitchen to break the news that Mum falling off her bike the other week had far greater implications than just a grazed knee.

A picture of Alice Harbourne on a bike
Alice Harbourne: “My life is dictated by the same probability as the “guess which hand it’s in?” game”

Photo: Supplied

Huntington’s disease causes the progressive breakdown of nerve cells in the brain. It’s depicted bleakly in all representations, not just those as dark as Breaking Bad, partly because there’s no cure, and partly because it plays unambiguously on humankind’s worst fears: of not being the authors of our own fate; of deteriorating slowly into strangers; and losing the ability to drive, walk, balance, swallow, speak, and remember along the way.

Not to mention the worry of passing it onto your own children. Like Walt said, Huntington’s is genetic, with a 50 per cent chance of a child of someone with the disease developing it themselves. From that moment in the kitchen on, my life was to be dictated by the same probability as the “guess which hand it’s in?” game.

My mum died when I was 19 and she was 54. I was in my first year of university at the time, and resumed life as normal within a week, unsure of how else to proceed. Now, six years later, I’ve been spared the pain of witnessing the disease develop, but the double burden of genetic conditions is such that no child ever truly escapes. The past is troubled and the future uncertain. The onset of Huntington’s disease varies from person to person – though it typically emerges between the ages of 40 to 50 – and the speed of decline is unpredictable.

I made the decision this year not to be tested for it until I absolutely have to. But I’ve discovered it’s not that easy. I’m from the United Kingdom, and if I want to become a resident in New Zealand I have to prove my future health. I might not be able to travel or move overseas if I test positive, and I’ll struggle to get life insurance.

I already voluntarily go without all caffeine after I read that just one cup of coffee a day has the potential to bring forward the onset of some neurological illnesses by as many as four years. The potential risk isn’t worth it for me, no matter how tempting a brew or begrudging a barista faced with a decaf order.

I turned 25 in June – a quarter of a century. I hope to live until at least 100, but if I have Huntington’s, I’m potentially already halfway through my life. If so, what am I doing? I shouldn’t be watching Breaking Bad; I should be making meth and earning millions! I shouldn’t be applying for residency in New Zealand, but living illegally in America! And, perhaps most importantly, I should be drinking all the cold-brew coffee Auckland cafes can produce!

Three phrases are used liberally to refer to our generation: “quarter-life crisis”, “boomerang children” and “first world problems”. We’re putting off big life decisions until much later than our parents did, be it getting married and having children or settling into a career path. We’re often said to be a self-absorbed and entitled bunch, moaning about the trivial to avoid addressing the grand.

I’m entirely guilty of an archetypal ‘Gen Y’ attitude, but my quarter-life crisis could be a mid-life one. I want success professionally and personally, and I want to try everything once before I settle down. That can wait, I reason – but there are 50-50 odds that it can’t.

A picture of Alice Harbourne on a bike
With a 50-50 chance of having inherited Huntington’s disease, Alice Harbourne has the choice of playing it safe or living life in the fast lane.

Photo: Supplied

It’s a confusing time. By committing to a career and playing it safe in my personal life, Plan A ensures am already a few rungs up the corporate ladder, with a stable future ahead of me should I test negative.

Plan B is a nihilistic bucket list on speed (probably involving lots of it, too) that sees me try everything and anything, flagging structure, ties and authority in a frantic bid to live life to the fullest.

But I’ve invented Plan C, which is simply an attitude, inspired by the comforting thought that we all might die tomorrow. The postmodern philosopher Jean Baudrillard came up with the theory that our culture is unintentionally one of death. He argued that we’re so removed from the physical process that we sequester the reality of it. We do everything we can to delay the end, but by striving to keep healthy, by not smoking, by obsessing over BMI, by giving up gluten, we’re simply living death.

Baudrillard would argue that by going without caffeine, I’m living Huntington’s – and he’d have a point.

I’ve come to realise that to live life fully when you might die at 50 is to live life as if you might die at 150. I try and remember this daily, and actively relish the freedom I have right now. I went ice skating recently, and as each foot did what it was told, I didn’t care if I fell over; I was just happy to be upright.

That doesn’t mean I won’t still waste days watching TV hungover, or that I’m uniquely enlightened with the knowledge that we’re all going to die. I just wonder that if my mum knew that one day she’d be unable to ride a bike, she’d have cycled more.

 This content is brought to you with funding assistance from New Zealand On Air.

Join the discussion »

“Hi Alice

Great article. Mum Mum has Huntington's disease and I am gene positive. It has been a journey and a half getting to this point. We've made a documentary about it which is premiering at the NZ International Film Festival in Wellington.

” — Bridget Lyon

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