I Don't Really Get This 'Smell' Thing

I'm a stay-at-home Mum and author. In that order. I primarily write thrillers but I haven't fully settled on a genre. My books dip into the realms of sci-fi, fantasy, and romance. This is my first foray into the world of non-fiction, so bear with me. It's also the first time I've ever written about this. So, this is it, my true feelings about anosmia, warts and all. I'm not good at holding back. Oh, and brevity - I'm not good at that either.

My family first found out that something was different about me when we were living in Hong Kong. Driving through the streets of Aberdeen, they all spontaneously rolled up their windows in unison. I didn't. They couldn't believe that I wasn't repulsed by the stench of the place. But I wasn't. It smelled the same as everywhere else to me. It was assumed I was being 'difficult' and an argument ensued. I didn't get it. I had assumed I could smell. Still, I couldn't actually say that I understood what smell was. I was about seven.

When I was nine, we were living back in England and my mum took me to get tested by a specialist. I remember being asked to take a whiff of several sealed jars leading up to the most powerful, apparently, 100-year-old cabbage water. I forgot to keep my mouth shut on that one, typically, and it really did pack quite a punch. The doctor explained that I had inhaled the scent and picked it up on my tongue. He said there were three bits to smelling. A part in my nose, the part in my brain, which receives the smell and alerts me to what it is, and the connector between them. He said that the part in the nose was both present and functioning. The problem had to be with one of the other two and there was no way of knowing short of brain surgery.

Honestly, I didn't truly believe him. I had, after all, smelled the cabbage water, right? Perhaps my abilities were just a bit rusty.

When I was sixteen, a gourmet chef friend of mine invited me for a dinner party. The starter was a sort of garlic dumpling. I was hungry but I couldn't taste it at all. I actually physically couldn't finish it. That was when I learned that texture wasn't everything. Taste was also important.

When I was seventeen, I almost blew up a friend's house. She had a gas cooker and had left me to put the pasta on while she went upstairs to the loo. I didn't know you had to light the damn things. Soon after, she emerged shouting at me to open all the doors and windows and not to turn on any lights. My first experience of a gas cooker. Needless to say I've always had an electric stove.

In my late teens, I convinced myself that practise was working. True, I was inhaling through my mouth rather than smelling, but I could 'sense' ketchup, I was sure of it. I excitedly told my Mum about this. She tried to let me down easy but I persisted and ended up with a very short list of things that, while I was eating, if I breathed in while it was about to enter my mouth, I could taste it before I actually tasted it. That had to be smell, right? My list included various things which were, basically, vinegar and, frankly, not that pleasant. I realised that the thought of walking down the street and being assailed by sensations of flowers in a garden, perfume of someone walking past me, fumes from a car, dog poo or dog breath or other things, didn't appeal and, besides, the pretence was taking too much effort to keep up. More than ten years after the appointment with the specialist, I accepted the fact that I couldn't smell.

It didn't stop me from being curious. I would see people smell fruit in the supermarket before buying and didn't get why. In a bookshop, people would open books and smell the pages before looking to see what was written there. Some would say they loved the smell of petrol while others found it disgusting. People said they could smell rain.

It's a very confusing world.

At University, I was apparently classed as disabled. I never found out why this was - they were very good at sending me messages about it, but not good at responding to them. I assumed it was what I'd come to call 'the smell thing'. Despite numerous attempts, I never got them to stop.

As I got older and the world of domesticity approached, I started trying recipes. Friends would say 'oh, it's easy' as if recipes are something you can just make up. They would, then, patiently, list the larger ingredients but suggest I chose a few herbs I might like, you know, like, whatever, and just bung them in. Herbs and spices may influence my taste, I don't know, but I'm certainly not aware of them. Some go together, apparently, and others don't. And quantity seems to be important. I don't get it.

A friend recommended baking fish in the oven with a single slice of lemon. I tried it. I couldn't taste it. Eventually, I ended up using a whole lemon strategically balanced across the filet. I still couldn't taste it.

A Danish friend of mine held a fondue evening. She's one of those people who goes to the extra effort - she's an excellent cook with extravagant recipes, a spotless house, works full time with two kids, and has a perfect figure. You know, one of those. It was my first meat fondue. For those that don't know, you have a pot of boiling oil (or stock) in the middle of the table and a two-pronged fork each. You pierce a piece of raw meat and dip it in the oil until cooked and then dip it in any one of a number of, in her case, home-made sauces before eating. She had about five different types of meat and about six different sauces. I can't taste meat, or at least, it all tastes the same but I can differentiate by texture, but when the slices are too small, I can't even do that. The sauces all tasted the same too. Basically, all I could taste was meat and ketchup. I didn't tell her this.

I had heard that polyps can stop you from smelling. In my late twenties and full of hope, I went to the doctor about this but he told me that for it to go on for so long, the thing would be hanging out of my nose by now. He checked anyway, bless him.

One year I cooked my then-boyfriend now-husband, Arek, a surprise birthday cake in time for him for when he got home from work. As soon as he opened the door he knew I'd been baking. He'd smelled it. I hadn't realised he could do that.

The next year, I cooked the cake first thing in the morning and spent almost the whole day with the doors and windows wide open to get the smell out. "Have you been baking?" were his first words as he walked in through the door.

He still gets a cake, but I no longer attempt the surprise aspect of it.

I tried to let all this go and concentrate on other things. By this time, I had a three year old and a newborn baby, and I finally felt as though my life was complete when I hadn't before realised a part of it was missing. Since having kids, I have never been happier. That changed slightly when a friend came over with her little girl, Zac's age, for a play date. As the little girl walked past Kai, my baby, she wrinkled up her nose and said: "Mummy, the baby's done a poo." For those of you who are mothers, you'll understand the difficulty associated with nappies. It's a bit hit and miss. Several unnecessary nappies were changed for my two and, sometimes, on occasion, if they did something immediately after a change, they ended up sitting in it for a while. It's horrible but there's not a lot I could do about it.

As much as I love my kids and as concerned as I was that my baby was lying there with a big smile on his face and something cold and icky in his nappy, that wasn't what bothered me about this. What bothered me was that I'd never heard those words come from Zac's mouth. It hadn't even occurred to me to use Zac as a poop tester, but, in principle, why wasn't he? I hopefully told myself that perhaps it's because I don't comment on it. Smell just isn't something talked about in our house. Still, I started observing my son.

That summer, the kindergarten had a summer fest with the theme 'the five senses' and there was a smell tent. I took Zac in.

There were six pouches of different scents. Each time the parent helper running the stand would ask him what it smelled of and he would shrug. Asking him what it smelled of wasn't the right question though and I knew it. So I asked him: "Do they all smell the same?"

"Yes," he replied.

And my heart cracked just a little bit.

Don't get me wrong. I consider myself lucky. If I was going to lose one of my five senses, smell is the first I would sacrifice. The thought of living without hearing or in a world of total darkness terrify me, but that isn't the point. When you have kids you become acutely aware of the blank slate they're blessed with. They can grow up to be anything. There are so many doors open to them. Their choices in life and decisions they make combined with numerous other factors will gradually narrow down their options but as my little boy uttered that single word, I heard a multitude of doors slam shut to him forever.

It didn't matter that I'd lived with this my whole life and I was, well, relatively normal. You want your kids to be perfect. They aren't. They can't possibly be. We all have something in our lives and at least I knew how to deal with this particular something. But, unreasonably, you still want them to be perfect.

So, apparently, the condition was genetic and, as far as I know, it started with me. There is some question over my paternal grandfather. He couldn't smell either but Grandma always said that was because he smoked too much. My mum says Grandma only said that because she wanted him to stop, but my dad and his sister both agreed that Granddad really could smell when he was younger. I'll never know for sure but I see no reason for my dad and aunt to lie.

So, it started with me.

I cannot describe the devastation a parent feels when they know they've broken their child. I didn't cope with it well. Tears were involved, although never in front of Zac. It was a real kick in the teeth when I realised, several years later, that my youngest, Kai, suffered from the same affliction.

My heart was broken and it was all my fault. It took a while to get over that, let me tell you. Children are so precious. I tell myself that there's no reason to think their quality of life will be any less than mine is, but still, you can tell yourself things as much as you want, it doesn't necessarily make you feel any better even when they're true.

Of course, he was really too young but we engineered a smell test for Kai. I had to know for sure. Zac wanted to partake in it too. It was kind of a game. Arek filled six beakers with what he assured me was smelly stuff. Coffee was one of them, lemon juice another, and I'm pretty sure he included banana in one of them. I forget what else there was.

We blindfolded Kai and had him sniff each one. My kids are both equally as marvellous as each other, but completely different people. Whereas Zac is straight-laced and conservative, Kai is creative and daring. So, he said, knowing beakers were involved, that the first one smelled of apple juice. The second one was pineapple juice. The third, well, you can probably spot a trend here. I looked at my husband hopefully. I knew Kai wasn't correct but perhaps he was picking up something. Arek assured me that coffee and apple juice do not smell similar. I didn't necessarily want to believe him but he seemed pretty confident and, having done this smelly thing his whole life, he should know.

Although we may be in the minority, in our house, we represent 75% of the population. We now refer to ourselves as the 'non-smellies' and all the others, who Arek refers to as 'normies' have become the 'smellies'. ?

In principle, I have the benefit of being able to cook in secret - the kids will never be drawn to the kitchen by the promising smell of a baking cake, but, unfortunately, my plans are often foiled anyway by the clatter of pots. The kids come down at the promise of a non-smelled something instead.

I realised, having never lived with anosmics before, that we weren't being particularly safe after a radio report of a gas leak on the news started me thinking. If there were a leak and the house filled with gas, the three of us would be dead before my husband could come home from work to tell us about it. So we've now installed some gas alarms to go with the smoke alarms in the house.

The kids teachers have to be informed. My kids have said something in the past but it's better when it comes from me. One teacher actually told me she'd thought Kai was fibbing. She said it kindly and she meant it that way - she was a really good teacher, but she hadn't known it was possible. I get that a lot.

It's important the teachers know though. Partly in case of a fire, although I'm always hopeful the smoke alarms will do their jobs in that respect, but I don't want them marked down in class for not partaking in the smell part of a 'five senses' class exercise - you'd be amazed how often those things come up. And when given an assignment to describe something, smell is going to be totally ignored by them. I've discovered that it isn't something you can fake and I leave it out of my books as well.

Of course, every now and then, my youngest, who seems to sometimes operate on a different plane to the rest of us, will kick me in the teeth when I least expect it. Like the time he assumed a friend of his couldn't smell either. I had to ask why he thought that.

"Of course he can't smell. He's younger than me."

Such an innocent comment made me realise that he still hadn't got it. He'd thought it was something he would learn. To know that babies can do what he can't is confusing for him.

And then there are the things they get wrong. On TV, they've seen people wave their hands in front of their face to waft away an unpleasant smell. They don't get why this is done, but they pick up on the expression of disgust on the person's face. They do it now too, but they don't do it right. They often don't wave their hand in front of their face but perhaps off to the side. And they, obviously, don't do it when they smell something bad, but, for example, when they hear a disgusting joke.

In my life, I've met one other anosmic (well, two, depending on what you believe about my granddad). She lost her smell through an accident. She is both luckier and unluckier than me. She at least understands it. She knows what things smell like, what herbs go together, what smells and what doesn't, and if they're nice or not, although I fear those memories may fade for her. She's unluckier than me in the sense that she's lost something I never had in the first place.

My children and I can't be helped. I'm under no illusions although I initially joined Fifth Sense when I was desperately sad about all this and unrealistically hopeful. I have tried to get my kids properly tested but the nearest place to where we live would be Cologne and it would be expensive. The health insurance have said they won't pay because there's nothing that can be done about the condition so there is no need for the tests to be done. Nothing like a piece of cold logic to slap you across the face when you're down.

I will get them tested one day. It'll cost us a lot, but I know I will. It's just something I'll need to do and I'm assuming that medical advancements have been made such that these mega-expensive tests don't simply involve taking a whiff of 100-year-old cabbage water with your mouth closed (where did they get that stuff anyway?).

What would I like to see come from Fifth Sense? From my perspective, I'd like to know how smell affects two things:

1. Memory. Mine is terrible and I understand that smell helps invoke memories. Is my anosmia the root cause of my memory being terrible or is it just a small contributing factor?

2. Weight loss. I'm pretty big. Not necessarily what you might kindly refer to as a 'large' woman, but I'm bigger than I should be. I add sugar to my cereal and salt to my food when cooking. I like food but I can't always taste it so well, so I alter it. Sugar is something I can taste. Garlic, for example, isn't. I add the things I can taste. As important as texture is, it isn't enough just to have that bit of variety. I know anosmia causes people to lose weight, but that's when they've lost their smell, not when they're born without it. I don't know what percentage of congenital anosmics there are out there. I understand, as a group, anosmia only represents 1% of the world's population (this may no longer be true, I learnt this a long time ago) but perhaps if anyone out there has also had it for longer than, say, twenty years, they'll have forgotten more about smell than they remember and can relate. I don't know. All I do know is that I really don't get this smell thing.

An edited version of this article was published in the Fifth Sense newsletter.
For further insight into this condition, visit Lars Lundqvist's blog 'Congenital Anosmia'.

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© Jacqueline Chandler 2014