‘Dying needn’t always be negative,” he tells me. “It can actually, bizarrely, be an empowering, exciting and liberating experience.” Gordon Aikman is 29 years old and will soon be dead. If reading that pulls you up short, hearing him say it in person is chastening indeed.

Gordon has motor neurone disease (MND), a rare, fatal illness that – for around half of sufferers – kills within 14 months of a diagnosis. In his case, it began with everyday routines and activities – like tying shoelaces – becoming ever more difficult.

MND moves fast: it shuts the body down, until walking, talking and swallowing become impossible, and then finally breathing. Last week, Gordon told a Downing Street fundraiser – politicians, charity workers, Samantha Cameron all there – that he was likely to be dead within a year, or at least almost entirely incapacitated.

Gordon is an exceptionally talented young man who faces being imprisoned in his own body and then robbed of life. As the late historian Tony Judt, himself killed by MND, put it: “There is no saving grace in being confined to an iron suit, cold and unforgiving … It is like being in a prison which is shrinking by six inches each day.” And yet: meeting Gordon is somehow soothing. He is calm, serene, philosophical. I would not begrudge him if he spent his final months consumed with anger and bitterness, telling anyone who would listen that no, it’s not OK. He went through a period of disbelief, sure, but his overriding emotion was one of frustration that – in 2014 – MND is a disease with no cure.

I draw attention to Gordon not to lecture anyone about the right way to die, to leave other terminally ill people feeling somehow guilty for being insufficiently upbeat or cheerful about their plight. Nothing is more personal than our own death, and no one should be told how to approach it. But Gordon does, I think, bring into focus the right way to live.

He’s a resolute campaigner, leading Gordon’s Fightback – shortlisted already for an award – to double research funding, shorten the waiting time for benefits, and have publicly provided MND nurses.

Gordon will die of the disease, but he will make the lives of others easier. Equally moving, though, is his clarity, a radical reassessment of priorities that only an abrupt death sentence can provoke. “I certainly didn’t expect to be planning out my final months at 29 but it’s strangely liberating,” he says. “I feel more in control than ever before; from how, where and who I choose to spend each day, right down to what music will play at my funeral.”

Judt’s “iron suit” may seem like a nightmarish fate, but Gordon would “rather have it this way than a sudden death – where there’s no control, no goodbyes, no chance to do the things you had always dreamed of”. The last few months have been among his happiest. He spends more time with his friends and loved ones; his “relationships have taken on a new intensity”; he has travelled to places that had always appealed.

Cliches are often useful tidbits of wisdom imparted too often to have any remaining emotional impact: “live every day as though it is your last” being a prime example. But, as Gordon observes, the lesson that those close to death can teach the rest of us is how we spend our finite lives. Because death seems so distant and abstract to most of us, we all too often tolerate the needless loss or theft of our time, instead of spending it being enriched and sharing experiences with those we love. Being human, dare I say it.

Many of the obstacles to happiness in our lives are socially constructed: that is, they are the product of a society in which great prosperity is allowed to coexist with insecurity and poverty. Then there are barriers in the form of the expectations placed on us by ourselves or others.

Consider the statistics. On average, workers use just 77% of annual holiday leave, and only half use it all. More than two-fifths of us work when we’re supposedly on leave. In our “lunch is for wimps” culture, 5.4 million regularly work overtime for zilch. The opportunities provided by being connected digitally are exciting in many ways, but they also leave many of us perpetually locked in work mode.

According to a recent study published in Chronobiology International, checking work emails at home and the like can cause serious health problems, such as insomnia and anxiety. What should, ideally, be an ironclad division between work and leisure has been eroded. Londoners now only have an average of 15 hours of leisure time during the working week. Throw in the 10,634 hours we spend on average commuting to work over our working lives, and the picture is even clearer and bleaker. We lose too much time to work, and don’t spend anywhere near enough time loving, playing, relaxing. We’re even sleeping less and less. It’s damaging us. No wonder, on average, workers took 5.3 days off work in 2012, with stress, anxiety and depression being the leading causes.

A passionate political campaigner, Gordon is among those who talks about how enjoyable fulfilling work can be. But I look at his life now – even as MND ravages his body – as an example of how time should be spent. No staring at ceilings at ungodly hours fretting over problems that will be forgotten in weeks; no checking work emails, almost as a nervous tic, when they can wait; no neglecting friendships that sustain and give life meaning. Instead, Gordon lives a life of friendship and love, all the while campaigning to make the lives of others easier and less frightening. The life of a dying 29-year-old, it turns out, is the model life for all of us.

Gordon’s last few months will be hard, progressively more so. He is being stripped of his physical independence; he’s constantly finding things he can’t do; he’s adjusting to looking up at people from a wheelchair. But he’s happy, because he’s discovered what it is to live.

It shouldn’t take a fatal illness for us to do the same. It certainly does need a different kind of society, and a different way of life. That, for me, is the lesson to be drawn from a 29-year-old man confronting his impending death.

• This article was amended on 10 November. The phrase ‘Londoners now only have an average of 15 hours of leisure time a week’ now reads

‘Londoners now only have an average of 15 hours of leisure time during the working week’