It’s a bright, crisp morning and you walk to work through the park. Banks of creamy-gold narcissi are out and you can hear birdsong. The joggers seem to be running faster than they were a month ago, as if the spring light has given their feet extra bounce. You know there is something special in the air, but you can’t fully grasp it. “Don’t you love spring?” a colleague asks when you arrive at the office. You don’t like to admit that, no, you don’t love spring, any more than you love Christmas or autumn or summer. The passing seasons are almost meaningless to you.
Those who lack a sense of smell – the technical term is anosmia – are cut off from a thousand small joys that the rest of us depend on. It is deeply disorienting. When the American food writer Marlena Spieler lost her sense of smell after a head injury from a car accident five years ago, she no longer recognised herself. When I first met her, years before the accident, Spieler was obsessed with the minutiae of different food smells. She is the author of more than 20 cookbooks and we used to have long conversations about how dried mint smelled different from fresh, or the perfume of various citrus fruits. Now she could not so much as smell her morning coffee, never mind tell if it was a good cup. Cooking and writing about food had been her identity for decades, and now it was “as if I had ceased to exist”. She hated being this new person, someone who couldn’t tell if there were lemons in the kitchen. She would ask close friends, “Do I seem like myself? Am I acting like myself?”
Tom Laughton lost his sense of smell 25 years ago, when he was a 19-year-old student. He was assaulted by a stranger on the street, who smashed his nose in. Over the years, Laughton has had several operations, but his sense of smell is damaged. Despite a happy marriage and a good job – he gives businesses psychology-based training to improve working relationships – he always feels something is lacking, particularly when the seasons change. He yearns for the scent of winter mornings and summer evenings. And it is not just individual smells he misses, he tells me, but also his “sense of place” in the world. “With smell, when breathing in, the world comes inside us. Without smell, when I see things, they just stay where they are. They are nothing to do with me.”
Laughton’s loss of smell is not total. In medical terms, he would be classified as “hyposmic” rather than “anosmic”. “If my problems were with sight, I’d be partially sighted rather than blind,” he explains, “but it’s as if nine-tenths of the picture has gone.” Laughton has no control over which elements get through. He has two children, aged 14 months and three. “I can’t smell them, but I can smell their shit.”
A year ago, Laughton had a sinus operation that briefly restored his sense of smell. “I was sitting eating porridge for breakfast and suddenly I could get all of it: the nuttiness, the aroma of the oats. I sat there crying at the kitchen table.” But a few days later, his sense of smell vanished again, just as suddenly as it had returned.
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To live without a sense of smell is one of the more unsettling forms of human disability, and one of the least understood. It’s a double trauma: you’ve lost something you probably never realised would matter. Where damage to other senses is recognised as traumatic, loss of smell is seen as trivial, even by doctors.
Yet scent appears to activate emotion in the brain more powerfully than any other sense. In her 2011 memoir Season To Taste, the chef Molly Birnbaum, who lost her sense of smell in an accident, wrote that “the olfactory system is only a short step away from the amygdala”, the part of the brain that “processes memory and emotion”. In her own case, Birnbaum found that anosmia made her angry. When people came into the bakery where she worked and said how good it smelled, she wanted to “spit on their food”.
I became aware of anosmia myself around 10 years ago, when my husband fell off his bike and suffered concussion. For a few months afterwards, he couldn’t taste anything. He’d always said he didn’t care much what he ate, which annoyed me, since I am a food writer. But it turned out he did care. Without flavour, his mood noticeably lowered. Meals started to sadden him. He ate a lot more Marmite than usual. I watched him chewing doggedly, as if trying to extract some hint of recognition from what was on his plate. It was a huge relief when his sense of smell came back, as mysteriously as it had vanished.
As a child, I played hypothetical games with my friends about which would be worse: deafness or blindness. Would you rather watch TV without the sound or hear it without the pictures? We never thought to consider whether we’d rather lose our sense of smell or our sense of taste. Maybe we didn’t even realise that they are effectively the same thing, since almost everything we think of as “taste” happens through the nose. We smell breathing in; we taste breathing out, through retronasal olfaction. When you “taste” something, the chemical compounds that make up any given flavour (garlic! butter! lemon!) travel into your nasal cavity through the back of your mouth. Anosmia sufferers can usually still perceive the basic tongue-tastes of sweet, sour, salty and bitter; but, without the flavour to offset them, the joy is lost.
To judge from how little we speak of anosmia, you’d have no idea how common it is. Statistics are hard to come by, but a survey of nearly 10,000 people in Spain suggested that only 80% had a completely normal sense of smell and nearly 20% had some form of smell impairment. Total anosmia is more unusual, but may still affect more than 5% of the population, according to a 2004 study of around 1,400 adults in Sweden.
Smell disorders have many causes and take many forms. Some endure parosmia, where phantom smells – usually disgusting chemical odours – take the place of the real ones. I came across the case of a woman who suffered so badly from phantom smells that she vomited whenever she ate and was taken to hospital with malnutrition. Like anosmia, this can be caused by head injury, as damage to the olfactory bulb can interfere with the brain’s processing of smells. Other causes of smell loss include respiratory viruses such as flu and cold, or stroke and Alzheimer’s, but in a quarter of cases there is no clear reason at all.
Fenglin Guo was 40 when she noticed she was losing her sense of smell. Neither her GP nor an ear, nose and throat specialist could find any cause. The GP prescribed nasal drops, but they didn’t help, leaving Guo in a state of permanent anxiety.
“I live alone,” Guo says. “I can’t smell food. If the food went bad, I wouldn’t know.” She spends a lot of time inspecting use-by dates and obsessively checks whether the gas is on when she leaves the house. But the doctors, she says, “just didn’t see it as important”.
The first inkling Guo got that there might be other treatments available was through the British anosmia charity Fifth Sense. Everyone I speak to tells me that this organisation, set up in 2012, has helped them cope, largely because it was such a relief to find others going through the same thing. The website offers information on treatment options, from surgery to smell training using essential oils; there are conferences where anosmics can meet others who understand the condition. The charity was set up by Duncan Boak, a dynamic 32-year-old with a shock of curly black hair and a fondness for flamboyant waistcoats. Boak looks more like someone in a rock band than an activist, and indeed he spent much of his 20s in failing bands before dreaming up Fifth Sense, which offers the support to which Boak wished his own doctor could have pointed him.
In 2005, Boak, then 22, went out drinking with friends, fell down a flight of stairs backwards and hit his head. When he returned from hospital, he remembers eating risotto and having “a little glass of red wine” and thinking, “This doesn’t taste of anything.” Over the next six years, he became “a colder, harder, angrier person”, unable to relate to the world around him. I believe him, but it’s hard to imagine a less cold or emotionally detached person than Duncan Boak. Over the past four years, he has formed a community of British anosmia sufferers where none existed before.
One of his own ways of dealing with anosmia, surprisingly, has been through cooking. He likes to spin out the prep time, to heighten his anticipation. He tries to enjoy the sight of vibrant green parsley on a chopping board, even if he gets nothing from the flavour (with his eyes shut, he can’t tell chopped parsley from coriander). He encourages other sufferers to focus on the tiny differences they can notice in the mouth, even in the absence of flavour – the way that one cup of espresso tastes sweet on the tongue while another is acidic.
Most anosmia sufferers find it hard to be so upbeat about food. For Dan Kunkle, who became completely anosmic after brain surgery to remove two aneurysms nine years ago, food is a constant downer. When he woke up from the operation, he thought the reason he couldn’t taste anything was that “hospital food is tasteless”. When he realised it was something permanent, depression set in. “People say you get used to it, but you don’t.”
Kunkle, a humorous 60-year-old American geophysicist, met Boak through Fifth Sense. The two men were eating together at a Peruvian restaurant a year or so ago when Boak tried to get him to appreciate the bitter sensations in a plate of braised kale. “Duncan said, ‘You’re eating too fast; keep it in your mouth’ and I did and, yes, I got the bitterness. But in the end I don’t care.”
Kunkle still cooks for his wife and three teenage children – homemade pesto is a favourite – but the lack of flavour never ceases to disappoint. “If food can’t be a luxury, what can?” He adds Tabasco and excess salt to all his meals, just to feel something. Every year on his birthday, he still takes the family out “for a really expensive meal” that he can’t actually taste. It’s hard to break these traditions, when food is the universal currency of celebration. For New Year, Kunkle still cooks a huge dish of pork and sauerkraut – a tradition from his Pennsylvania childhood – and keeps asking everyone, “Is the house stinking yet? Because it should smell really strong.”
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I meet Dan Kunkle for a drink in a pub near his home in Cambridge. He comes here a couple of times a week after a squash game, because he finds that the “thirst and vigour” of exercise help him enjoy his otherwise flavourless pint. The barman, who knows he can’t smell, adds a generous measure of lime cordial to his beer, for sweetness. Kunkle is touched by this little gesture of sympathy. He tries not to sound like a “middle-aged grump”, but he often struggles with the lack of understanding, such as the tedious witticisms about how lucky he is not to smell drains or manure. “Would you ever say to a blind person, ‘Jesus! This painting is ugly! You should be glad you can’t see it!’?” He is irked by the false cheer of people who say things like, “Can’t you enjoy texture?” He grabs the towelling barmat on the table. “This is texture! Do you enjoy this?” Nor has he ever had much empathy from doctors. When he mentioned to the surgeon who performed the operation that his sense of taste seemed to have gone, the consultant said, “That’s odd. Usually that happens when I drill here, not here.”
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“The doctors treat you like you’re stupid,” says Dawn Millard of her long battle to get treatment for her daughter Abi, 11, who was born anosmic. Congenital anosmics face different difficulties from those who develop it later in life. Whereas other anosmics are haunted by the smells they have lost, Abi has no idea why certain smells are considered special. She has never, for example, known what Christmas smells like. “I’ve been told bacon smells lovely,” she said when I first met her and her mother last year.
Dawn and her husband Lloyd, who live in Dorset, didn’t notice there was anything wrong with Abi until she was about four. At dinner time, she would often mess around and not eat much. Eventually, they did a blind taste test and found that Abi had “no inkling” what many everyday foods tasted like. “She thought cooked carrots were potatoes. Pepper she thought was grains of sand. She couldn’t name strawberries, though I gave them to her all the time.” Most of the time, Abi is a happy, confident person; she is preparing for a black belt in taekwondo. The exception was mealtimes: Dawn started to realise to her dismay that Abi had no real enjoyment of food. When I first spoke to Dawn, she worried that Abi – then nine – might develop an eating disorder, because she never seemed to register hunger.
Yet when the Millards sought medical help, they were repeatedly told there was nothing that could be done. “We must have seen six different ENTs [ear, nose and throat specialists] over three or four years, and they all said, ‘No, no, no.’ One time we came back from an appointment and Abi burst into tears. They’d say to us, ‘If you’ve got to live without one sense, this is the one.’” It was only when the Millards met Duncan Boak that they realised there was a chance that Abi wouldn’t have to live without a sense of smell after all.
Boak put the Millards in touch with Carl Philpott, who runs the smell and taste clinic at the James Paget hospital in Great Yarmouth. This is one of only two specialist clinics in the country (the other is at the Queen Elizabeth hospital in Birmingham). Philpott sees his task as “getting people aware that this isn’t always a dead-end problem”. For anosmia caused by head trauma, there is currently little that can be done; the biggest thing for these patients is “giving them the time of day” and making them aware of coping techniques. In some cases, however, there is hope of a cure. For anosmia rooted in sinus and nose conditions, there are often various treatment options, despite what GPs and ENTs may say.
In Abi Millard’s case, the problem turned out to be a severely bent septum – “My silly nose grew wonky,” is how she puts it. Unlike some congenital anosmia sufferers, Abi does have an olfactory bulb, but the smells couldn’t get through the top of the nose to reach it. In July this year, she had an operation with Philpott to reopen the pathways. Despite the number of times the Millards had been told nothing could be done, the surgery “wasn’t particularly technically challenging”, Philpott says. Abi sends me an email with lots of smiley emoticons to break the good news that the operation worked. “It’s so cool to get the new smells,” she says. “I thought I might have to wait for billions of years in the future to be cured.”
Not long after the operation, Abi was “at my nana’s house” and tasted – really tasted – a bit of a Terry’s chocolate orange. “I thought, ‘Oh my God! I can taste the orange!’ Before it was just Terry’s chocolate.” The pungency of garlic bread was another surprise – “It used to be just bread with a bit of flavour.” From her mother’s perspective, the biggest change has been seeing Abi get hungry for mealtimes and looking forward to eating. The other day, they made a banana cake together and Abi put her nose in the bag of brown sugar and suddenly got the warm, caramel scent.
Her sense of smell is still not perfect, though, and Dawn says she will probably need further operations. At the moment, it comes and goes. When I ask Abi if she’s ever smelled cut grass, she says, “I wouldn’t have thought grass has a smell.” She has to run to check with her dad if she’s smelled bacon yet. “No, I haven’t,” she confirms.
But, as Abi says, at least she is no longer “smell-less”. The most rewarding part of Philpott’s work is seeing what a change it makes when he is able to restore or improve a patient’s sense of smell. “Their degree of enjoyment of life goes up a notch. They realise all they’ve missed.”
This makes it all the sadder that the future of Philpott’s smell and taste clinic is currently under review by the local clinical commissioning group. Because so many patients are referred in from other parts of the UK, the clinic is associated with long waiting times for sinus surgery. “Perhaps they see it as a luxury that can’t be justified.”
Then again, perhaps we are all guilty of treating our sense of smell as a luxury. We associate it with expensive perfumes and little think how alien daily life would be without it. Imagine not being able to smell a baby’s downy hair when you hug them; not to realise someone has been baking hot cross buns. Recently, Duncan Boak attended a meeting of the British Rhinological Society to raise awareness of anosmia among medics. He asked consultant ENTs to put on noseclips and taste different flavours of sweet mousse. “It came as a complete surprise to many of them that they could not taste the different flavours,” he tells me. “And these are nose specialists.”
You can see why anosmia sufferers might feel isolated and angry, as the rest of us blithely go about our business. We do not notice how our sense of wellbeing is propped up by a thousand subtle odours, especially as the seasons change. It is the smell of hot tarmac and street food when you fling the windows open on an August afternoon. It is bonfire smoke in November and strawberries in June. It is walking through the door at the end of a long day and knowing, even with your eyes shut, that you are home.
• Bee Wilson is the author of First Bite: How We Learn To Eat, published by Fourth Estate at £12.99.
