Excerpt for A World Without Smells by , available in its entirety at Smashwords









A WORLD

WITHOUT

SMELLS



LARS LUNDQVIST





2017





A WORLD WITHOUT SMELLS

Published by Lars Lundqvist at Smashwords

Smashword Edition, License Notes

This e-book is licensed for your personal enjoyment only. This e-book may not be re-sold or given away to other people. If you would like to share this book with another person, please purchase an additional copy for each recipient. If you are reading this book and did not purchase it, or it was not purchased for your use only, then please return to Smashwords.com and purchase your own copy. Thank you for respecting the hard work of this author.



Copyright © 2017 Lars Lundqvist

All rights reserved.

ISBN: 9781370972111



Cover photo: My Good Images/Shutterstock.com











To Elsy,

for teaching me

about smells


CONTENTS


Prologue—for those that can smell

Part One - I am anosmic!

I am alone!

I am not alone!

An ordinary day

Analyzing the day

Growing up with anosmia

I am anosmic

Is your child anosmic?

How can you be sure?

Being an anosmic parent

Comments about smells

The absurd world of smells

Part Two - Life with anosmia

The sense of taste

Anosmic taste

Food and anosmia

Bad food

Living by rules

Rules—a blessing and a curse

Anger

Sorrow

Fire and other dangers

Help me!

Part Three - The anosmic world

Acquired or congenital

What causes anosmia?

Are there cures or aids?

Anosmic superheros

Nothing is disgusting

Cleaner but less beautiful

Memories and time

Am I disabled?

Not missing what you miss

The anosmic community

Anosmia and language

Epilogue—Two final questions

Acknowledgement

Thank you for reading this book!









Prologue—for those that can smell


IF YOU HAD to give up one of your senses, which would you choose? Sight? Hearing? Touch? Not very likely. So if the choice stands between smell and taste, what would you choose? Most people probably choose the sense of smell, possibly thinking that they would not want to be without the taste of food and that smells are not that important in a modern society. But do they really understand what they would miss without a sense of smell?

The sense of smell is somewhat like an undercover sense. You seldom notice it, but it is continuously working, informing you about your surroundings. Often you do not even think about it. Imagine a summer morning. You are lying in your bed, eyes closed, listening to the morning sounds. Through the half-open window you suddenly hear an engine working somewhere and at first you cannot identify what it is, but then you realize that it probably is the neighbor who is mowing his lawn. You hardly noticed the whiff of freshly cut grass but it was enough to let your brain draw the correct conclusion. Next, you smell coffee and realize that someone has already begun making breakfast.

Even before you open your eyes, your sense of smell has given you information about your surroundings, and not only about what is happening in your bedroom, but also about things occurring elsewhere, like the neighbor mowing his lawn and somebody making coffee in the kitchen. Smells tell you that someone is baking bread, that spring is in the air, that it is time to change the baby's diaper, that bread in the toaster is getting burnt, that your neighbor has lit his grill, that dinner is on the stove. The sense of smell can carry information from far away, about things that are beyond hearing or sight. And most of all, what you perceive as taste is actually mostly smell.

But what if there were no smells? Imagine that summer morning again, lying in your bed. You hear the engine working but there are no smells to help you identify what it is. You have to get up and look out the window to see the neighbor mowing his lawn. And there is nothing to inform you that someone has started the coffee machine, until you go down to the kitchen and see it.

Try to imagine the world you know, with all its familiar things, but without smells. If you have ever had a really bad cold you probably know what it feels like when your sense of smell does not work properly. That gives you an indication what it would be like to lose your sense of smell. But what if smells had never existed? How would that have changed your perception of the world, and how would it change your everyday life?

For a small group of people that is the way the world is. I am one of those. I was born without a sense of smell, so to me smells do not exist and never have. I live my life in the midst of your world, without you noticing that my smell-free world is very different from your smell-centered world. And sometimes our worlds collide, especially when I have to adapt myself and my life to all your rules about smells.

In this book I will try to describe my world without smells, and what it is like to live in a world where everyone else perceives a dimension that does not exist in my world.


PART ONE

I am anosmic!









I AM ALONE!


LET US START from the beginning.

Anosmia.

Have you heard the word before? Probably not. Anosmia comes from the Greek words an meaning "without" and osme meaning "smell". Together they mean "not having a sense of smell". Everyone knows that blind means that you cannot see, and deaf that you cannot hear, but there is no simple word for "not sensing smells". Not even those who are anosmic usually know that their condition is called anosmia and neither did I.

Anosmia is an invisible condition. You quickly notice if someone is blind or deaf, but how do you notice if someone is anosmic? It does not show on the outside, or in the way we anosmics behave. An anosmic communicates in the same way that everybody else does, eats the same food, and appears to function just like anyone else.

There are two kinds of anosmia; acquired, which means that you lose your sense of smell at some point in life, and congenital, which means that you are born without the sense.

I am a congenital anosmic so I have lived my whole life without a sense of smell. To me it is natural that there are no smells. It has always been like that. My world has always been without smells and I usually do not think at all about smells.

So what was it that triggered me to start looking for information about anosmia at the age of 57 and made me write this book? Strange as it may seem it was the absence of a comment.

Everything started with my wife going away over the weekend to visit a relative while I stayed at home taking care of our horses, cats and the dog. On Saturday afternoon, around five, I was sitting with my laptop doing something, when it suddenly occurred to me that it was like a normal weekday when I was working from home, except for one aspect. My wife would not come home from work and say something about stuffy air or some bad smell in our house. Good!

What? Where did that "Good!" come from?

My reaction surprised me, to say the least. I had never thought that comments about smells had bothered me, but my own reaction made me realize that they obviously did, in a way that I had never really understood. So I began to analyze things that had happened in the past, things that had been said over the years, and how I had handled different situations involving smells. And I suddenly realized that although my wife, my children, my siblings, my parents, everyone close to me, rationally know that I have no sense of smell, they do not know what that actually means. They do not understand the ultimate consequence of living in a world without smells and how I really do not understand anything about smells. But what really shocked me was when I realized that I myself had never really understood this either.

It all ended with me sitting on the floor, crying. It was partly because I finally admitted to myself that I really did not understand anything about this thing called smell, but perhaps even more because I realized that no one else could understand how it felt to be so totally cut off from a whole dimension of the world that everyone else was experiencing. And most of all, the feeling of being completely alone about this. How could others understand anything about something I hardly understood myself?

I had been living with this for 57 years, and had always joked about it, pointing out the advantages of not having to smell anything bad. I had never really admitted, not even to myself, that there were problems as well, disadvantages, and that absence of a sense of smell is a disability.

When I had finished crying, it occurred to me that there must be others without a sense of smell. I could hardly be unique. There should be information somewhere. So I started to search the internet.







I AM NOT ALONE!


MY FIRST SURPRISE was that my condition had a name: anosmia. The second surprise was that there was almost no information in Swedish on congenital anosmia. I thought that books about the topic should exist, or official information on the internet, but I found almost nothing in Swedish. There were a few articles about anosmia in some local newspapers, but usually about acquired anosmia, about people who lost their sense of smell as an adult. In the very few articles about congenital anosmia it was usually presented as a funny curiosity, and never taken seriously.

So I wrote to the National Board of Health and Welfare (Socialstyrelsen), the government agency in Sweden that falls under the Ministry of Health and Social Affairs. Its responsibility is to "ensure good health, social welfare and high-quality health and social care on equal terms for the whole Swedish population". I asked for information about "isolated congenital anosmia," which means that you are born without a sense of smell but otherwise healthy. The answer from their "Information center for Rare Diseases" was that "We have no separate information on isolated anosmia". Next, I wrote to the "Swedish Disability Federation," the umbrella organization in which 39 disability organizations co-operate to be the "united voice of the Swedish disability movement before government, the parliament and national authorities". I thought that maybe they would have some information on anosmia? The answer I got was "Have you tried the National Board of Health and Welfare?"

Congenital anosmia obviously does not exist in official Sweden. One might wonder why.

When I could not find any relevant information in Swedish, I began searching for information in English instead, and suddenly I found a whole new world. There were all sorts of web pages on anosmia, and many blogs. Some active, some inactive. I found associations, mailing lists, and finally the Facebook group "Congenital anosmia".

I can still remember the initial feeling when I joined the group. It was the first time I got in touch with other congenital anosmics:

"Wow! Others like me! Finally! People who understand what it is like to be anosmic!"

And above all, "I am not alone!"

The discussions in this group really has helped me in my attempts to understand my own anosmia. I found answers to my questions, tips on web pages and articles on congenital anosmia, and could compare my experiences with those of others.

Suddenly I had somewhere to share my thoughts about anosmia. A place where my experiences were not seen as unusual or abnormal, but quite normal and ordinary. I read what others had posted, read their comments, asked questions, commented on others' posts, and so on. The feeling of relief was enormous. I was in a state of euphoria for several days.

While searching the internet for information on anosmia I made a list of problems, advantages and disadvantages in my everyday life. I read about the sense of taste, tried to learn about the sense of smell and different kinds of problems that could occur. After a while I decided to organize all the information in a more systematic way. The end result was this book. It became a way for me to understand and accept my own anosmia, and to come to terms with the realization that I have lived my whole life in a world without smells.

What is it like to live with anosmia from birth? How does it affect my day-to-day life? The easiest way to describe it is to tell you about an ordinary day, and to show you when I am reminded of or affected by my anosmia.







AN ORDINARY DAY


IT IS A normal day in mid May. The snow melted early this year, so the grass is already green, but the buds of the birches are still sleeping. Spring flowers have just emerged in the flowerbed beside the porch. The alarm clock wakes me up just after 6 AM as usual. When I enter the kitchen my wife mentions that we forgot to take the garbage outside the previous evening, so there was an unpleasant smell in the kitchen when she came down. I answer "Okay" and drop the garbage in the dustbin outside, when on my way to pick up the morning newspaper. On my way to the postbox I notice that the grass and the driveway looks wet. It seems it rained during the night. When I am back in the kitchen I serve myself a bowl of cereal with milk, but notice that the Best-before date of the milk expired yesterday, so I ask my wife to smell it, to check that it is okay. After a quick breakfast I go upstairs to take a shower, and get a comment in the passing from my wife, telling me to change my towel. The one I have been using does not smell very nice, so I toss it in the laundry basket and pick a new one.

Driving into town we listen to a local radio station, and I think about the work to be done during the day, when my wife suddenly says that she smells something burning. I wonder if it has to do with the car, but as we keep driving the smell disappears, so my wife guesses that we passed a farm where they were burning something.

At work we have morning coffee around 9 AM. A co-worker mentions a smelly lunch box left in the sink since yesterday. I didn't notice, of course, but my colleagues make faces and say it's disgusting.

For lunch I brought leftovers from Sunday dinner. Standing at the microwave oven a colleague comments about someone having had salmon for lunch, and how heating it in the microwave makes the whole lunch room stink. What? How can nice food stink? To avoid a complicated discussion I ignore the comment.

In the afternoon, when we gather for a coffee break, someone asks about a weird smell in the corridor outside the labs. Another colleague explains what it is, emphasizing that it is harmless.

After work and coming home, my wife says "Leave the door open, it feels stuffy". When I answer "What?" she says "It smells".

After dinner it is time to go down to the stables to take care of our horses. The stable doors are wide open although it is chilly outside. One of the other horse owners says she left the doors open because of a thick smell of urine. My wife also comments on it and asks me if I really can't feel it. But no, I don't sense anything unusual in the stables. The air is the same as always, the same as outside the stables, or out in the yard, or in our house, or at work. Air can have different temperatures, and different humidity, but apart from that air is always just air.

We take the horses inside, groom them, and ride a tour around the village. My wife says there is a smell of smoke, and after a while I see a small column of smoke. One of the villagers is burning last year's grass and twigs. We eventually return to the stables and leave the horses indoors for the night.

Returning to the house I leave my boots outside because I know my wife wants me to. From what I have heard they smell strongly when coming directly from the stables.

Just before bedtime I remember I worked up a sweat while riding and taking care of the horses, so I take a shower before going to bed.

My ordinary anosmic day is over.







ANALYZING THE DAY


THE MAIN DIFFERENCE between us, congenital anosmics, and persons with a functioning sense of smell probably is that we never spontaneously think about smells, except as an abstract phenomenon when someone comments on it. I do not wake up in the morning thinking "Wow, I still can't smell anything". When I wake up, I think about anything except smells.

This particular day there had been twelve comments that made me think about smells. They were about the garbage in the kitchen, the milk, my towel, a smell of something burnt while driving to town, the smelly lunch box, someone heating salmon in the microwave, a smell in the corridor, bad air in our house, smell of urine in the stables, smoke in the village, boots on the porch, having worked up a sweat.

How often I think about smells on any given day depends on my surroundings. If no one says anything about smells during the day, I usually do not think about it at all. Twelve times, like on this particular day, is probably more than average. Then there are days when it is mentioned all the time, especially during spring and summer, when there appear to be smells everywhere. But comments about flowers and other things that smell nice often pass me by unnoticed. It is only when I have to react to the comments that I really notice them, and that usually means bad smells. Others sensing nice smells does not really matter to me.

Maybe you noticed that "using deodorant" was not in the list. Does that mean I do not use deodorant? No, I do use a deodorant, but doing that is part of my morning ritual. Strange as it may seem, this is not something that I immediately associate with smells, because to me the deodorant does not have a smell. Nor is "using clean clothes" on the list, for the same reason. As a kid I was taught that I have to change clothes, so when I put yesterdays t-shirt in the laundry bin I just follow routine. It is not because it smells of sweat because I actually do not know if it does. I do it because it is what you do. You wash clothes that have been used.

Neither "spring flowers" nor "wet grass and driveway" were on the list of things that reminded me of smells, for the simple reason that I was alone. No one mentioned how the flowers or the grass smelled. I saw the flowers and the wet grass, but I do not associate either flowers, rain or grass with smells.

In the end it is very simple. If someone mentions smells, especially bad smells, I notice and think about it. If no one does, I seldom think about smells or my anosmia. And even when I think about smells, I do not think about the smells themselves. I think about the abstract phenomenon 'smell'. The milk in the morning is a good example. When I noticed that the Best-before date had expired and asked my wife to smell it, I did it so she could decide if I could use it, not because I wanted to know what the exact smell was.

When I started writing this chapter, my original plan was to have my wife describe the same day from the perspective of someone who can smell, to list all the instances she noticed smells, and then to compare her and my list. It sounded like a good idea, from my perspective. What I forgot was that a person who can smell senses smells all the time, and usually without consciously thinking about it. It would be like asking a seeing person to keep a list of all the moments when she thinks about using her sense of sight and comparing that with a list of occasions when a blind person is reminded of her blindness. I am sometimes reminded about not having a sense of smell, but a person who has always had that sense is never reminded about having it, because it has always been there. We are literally living in two different worlds and they cannot be described in the same way.

But how did my anosmic life begin?








GROWING UP WITH ANOSMIA


WHEN I LOOK back at my early childhood, I have no memories of thinking about smells. I do not remember wondering what smell was, or thinking I was missing out on something. I do not even remember people talking about smells in my day-to-day life. I assume that my parents and other adults mentioned smells every now and then, like they did when I got older, but the only thing I remember is that I early on saw it as a kind of game, something people just said. When someone audibly farted, everyone else protested, vigorously displaying disgust, and so did I! I thought it was the sound everyone else was reacting to, so I mimicked their behavior, not understanding that there was more than sound involved.

When my parents read me books with stories and fairy tales, smells were sometimes mentioned, but also magic, gnomes, trolls, and other things that do not exist. In the animated movies I loved to watch, animals often sniffed at things, or tracked something, the way I had seen real cats and dogs do. I think I just accepted the fact that animals could smell things, but human comments on smells were only a part of the play, a fantasy, not about something that really existed.

So I just tagged along and said the same things although I did not know what they meant. I do not remember exactly when I realized there was something I did not understand when my family and friends were talking about farts and stenches, or the scent of flowers, but I was probably about 10-11 years old when I finally understood that there actually was such a thing as smells, and that others could sense them, like when dogs sniffed things. Still, not being able to smell did not seem to affect my life in any way. Smells seemed unimportant, especially as no one noticed my inability to smell. However, I do remember two occasions when the grown-ups possibly should have reacted and wondered if something was different.

The first occasion was an ordinary afternoon when I was seven or eight years old. I was outside playing with my best friend at the time, the girl next door, when her mother suddenly called her in to have dinner. I waited outside until she had finished so we could continue playing. We kept playing for another hour or so, and then finally said, "Bye" and parted. When I got home my mother was angry because I had once more forgotten to come inside to have dinner. She was tired of always having to remind me of eating. Did I not get hungry? Did I not think about dinner when my friend went inside to eat? Did I not smell dinner? My answers to all those questions were "No". To teach me not to miss dinner again she would not heat the food again, so I would have to eat it cold. I remember thinking that this seemed fair and it really did not matter. After all, the food tasted roughly the same irrespective of being warm or cold. I do remember that my mother was a bit surprised that I ate the cold food with the same appetite as if it had been warm.

The second occasion happened during a summer holiday at my grandparents' farm in northern Sweden. One day all the adults were about to eat "surströmming," fermented herring, a traditional dish in northern Sweden. The fish has a very salty and somewhat acid taste, but most of all it smells a lot. A lot! Most people find the smell appalling, to say the least. Many even claim that it stinks, smells revolting, like rotten fish, and so on. From what I have heard, children usually react stronger to the smell than adults do, and sure enough all the children fled outdoors, except me. I stayed inside with the adults eating the fish, and I loved it. I remember the grown-ups asking me if I did not think that it smelled horrible, and that I truthfully answered "No". Looking back I wonder why no one reacted enough to repeat the question and tried to understand why my reaction was so different compared to the other children.

Thinking back I remember not understanding at all what they were talking about. At the time I was still too young to understand that the others had a sense which I did not have.

When I was eleven my family moved. This meant new school and new friends. By then I think I knew that there was something called smell, which others could sense. But I do not remember thinking about it and definitely not understanding it. Others mentioned it every now and then but as it did not exist to me it did not matter, so why bother?

I got a new best friend, a boy living in the house next to ours. We played every day, all kinds of games. We were mostly outdoors, playing soccer or street hockey, or playing various games in the nearby forest, but we also played a lot in my room. Afterwards, when he had gone home, my mother would enter the room and open the window, politely telling me that it sometimes smelled of "young boys" and that she actually preferred that we did not spend that much time indoors. I remember not understanding at all, especially as the way she said it suggested that it was mainly my friend who was responsible for the smell. After all, I slept in there and that never was reason to open the window.

Another memory is when I was in my early teens and my mother suggested that I should start using deodorant. As far as I remember I only said "Okay" because I already knew from commercials that people used it, so I simply accepted that I too had to do that. I do not remember thinking about why I should do it. I think I just saw it as another one of those incomprehensible things that grown-ups did and which was part of growing up.

I gradually learned that I could not smell, but not knowing what it meant, I did not think about it. I guess my mind was on set other things, things that existed and mattered. It took another few years before I understood that my parents did not know that I was anosmic. So one day I told them.







I AM ANOSMIC


AS A CHILD you assume your parents are all-knowing, so it was not until I was in my early teens that I broached the subject. They were surprised, to put it mildly, and hardly believed me. When I persisted they claimed it must have happened recently. Surely they would have noticed if their son did not react to smells? Looking back it is not at all strange that they never noticed anything. Anosmia was completely unknown back then. It still is, not even talked about in children's health care.


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