I am one of those poor saps known as an anosmic, which means I have no sense of smell. I always believed this to be caused by the craniosynostosis with which I was born, and in 1997 an ears, nose, and throat specialist told me—after seeing my MRI films—that my olfactory nerve appeared to be buried under scar tissue that had been caused by my craniosynostosis repair surgeries. Finding the cause of my anosmia was not his primary goal for looking at my MRI films, though, and it is possible he only gave the olfactory section of my scan a perfunctory glance. I say this because I saw one of the top taste and smell disorders specialists in the US (at The Smell and Taste Clinic in Washington, DC) in 2000, and he gave me a conflicting cause of my anosmia. After running extensive tests on me, he seemed to think that my anosmia was actually congenital and is caused by the lack of a certain protein which stimulates the growth of the olfactory epithelium. He told me it might be possible to reverse at least part of the anosmia with a long-term course of medication that would reactivate the gene that generates production of the protein, but because my insurance wouldn’t cover treatment, I opted not to pursue it. Needless to say, the fact that my insurance company doesn’t deem anosmia to be important enough to cover is a huge pet peeve of mine!

I’m not sure how old I was before I discovered that I can’t smell. When I say that I honestly believed, as a child, that the dead air in my nose was normal and I was, in fact, smelling things, it doesn’t seem to make sense to anybody who isn’t a congenital anosmic. I think I also went through periods when I realized I could not smell, but I blamed myself; ie, I thought that I wasn’t trying hard enough, or I just wasn’t getting the hang of it.

After I figured out that I really couldn’t smell, and it wasn’t a matter of me being stupid or slow to catch on, it took me a few years before I finally came out of the closet as an anosmic, and it was only around 1999 when I learned the medical term for being unable to smell. A lot of people aren’t aware that this condition exists. Other people refuse to believe that I genuinely can’t smell anything. One person actually said to me, “Try harder!” This strikes me as being utterly ridiculous. It is one thing for a little kid to think that she needs to try harder to learn how to smell; it is another thing for an adult to perpetrate this belief. Equally annoying: people always forget that I’m anosmic—even people very close to me who have known about it for years and years. I realize that it’s a so-called “invisible disability,” but it’s also a rare thing, so why doesn’t it stick in more people’s minds? If I had a friend or relative with an unusual—yet invisible—condition, I don’t think that it would constantly slip my mind!

While anosmia is not as life-altering as blindness or deafness, I am still missing one of my five central senses. Many people don’t take this seriously. They say that I’m “lucky” because I can’t smell car exhaust, dog poop, smelly socks, etc. True…but I also can’t smell dangerous things like smoke, burning food, spoiled food, noxious fumes, gas leaks, and other danger signals. If I ever have children, I won’t be able to smell when they’ve soiled their diapers. My old car leaked toxic fumes and I was unaware of this until somebody riding with me informed me that there was a problem. I have drunk spoiled milk and eaten spoiled food. It is a dangerous state in which to exist. Not to mention the far less dire situation of not being able to smell myself to determine whether or not I’ve got B.O.! I can’t smell my condo to find out whether it stinks. Do you have any idea how paranoid an anosmic can feel when someone snarls, even in a public place, “Something stinks!” or “Ewww, what’s that smell?” I blush, my heart speeds up, and, even if I just got out of the shower, my first thought is always, Oh shit, I bet it’s me! Besides, at what expense am I “lucky” to be in a dog poop-less world? At the expense of flowers, perfume, candles, and so on! Is it worth it to not be able to smell dog shit if it also means that I can’t smell baking cookies? Of course not! And nobody would say to a blind person, “You’re so lucky you can’t see. It means you don’t have to look at garbage, dog shit on the sidewalk, and polluted rivers!”

I also want to add that no one knows how much anosmia can impact memory, sexuality, moods, and god knows what else. Memory: People always seem to comment on how smells automatically remind them of the past. Anosmics compensate in other ways, I’m sure. I am very prone to linking music to memories. A song, not a smell, will take me back to a certain memory in a split-second. But is that enough? Who’s to say that without the smell condition, the depth and breadth of memory is somehow weakened? Sexuality: Pheromones are naked to the invisible nose, so to speak, but if something has gone wrong in your nose, can the pheromones get through? After all, subliminal advertising in a movie (assuming it is visual and not auditory) isn’t going to a blind person any good. So-called hidden messages in a rock song won’t affect a deaf person. Pheromones aside, it’s hard to dispute the effect a person’s scent, whether natural or manmade, has on you. If a person smells badly, it repels you. If a person smells sexy, you might find yourself becoming attracted to him/her. Where does that leave an anosmic? Moods: Aromatherapy products exist because specific scents help you relax, perk up, concentrate, banish mild pain and nausea, etc. It is believed that certain scents can help qualm anxiety and sadness. It’s not fair that an anosmic misses out on the healing properties and mood stabilizers that scents can bring.

Never having known what it is like to smell anything, I don’t know what I’m missing. But there are times when I pine for the experience of smelling all the wonderful things in the world: baking, cooking, flowers, candles, my loved ones, aromatherapy products, Body Shop and Bath & Body Works products, perfume, a spring day, etc. As a kid I couldn’t smell the Strawberry Shortcake toys I loved so much and couldn’t smell the scratch n’ sniff stickers and scented markers that were all the rage in elementary school. There are times when I feel cheated.

The most common question I am asked is “Can you taste?” Some people don’t even ask—they tell me I can’t taste. As far as I’m concerned, my sense of taste is fine. Many congenital anosmics with whom I have spoken have said the same thing. Technically, “taste” and “flavor” are two different things, and congenital anosmics are not getting the full she-bang; ie, they are experiencing one and not the other. That’s fine, and I will readily admit that I can’t differentiate between spices, flavored coffees and teas, different-flavored jellybeans, etc. I will also, with some alcoholic drinks, only taste the alcohol, nothing else—no raspberry, no orange, or whatever else is in the drink. I underwent taste tests when getting diagnosed at the Smell and Taste Clinic, and I was told that I do, in fact, have a distorted sense of taste. I didn’t fail the tests, but I didn’t score an “A” either. I guess you could say, in terms of taste, I am a “C” student. A friend and I will be conducting a blindfolded taste-test soon; I will post my results on this website when we are finished! That aside, I think my sense of taste is okay. Contrary to what people think, I taste more than just sweet, sour, salty, and bitter. I can tell the difference between white chocolate and milk chocolate, Coke and Pepsi, oranges and grapefruit, American cheese and Swiss cheese, and so on. I know what I like and what I don’t like. Eating is very enjoyable, and it wouldn’t be half as enjoyable if I could not taste anything.

It is difficult to explain life as a congenital anosmic to a person with a normal sense of smell. Anosmia in general (whether caused by a brain injury, a virus, or another cause) is basically a foreign concept to a norosmic person. Yes, s/he has most likely experienced transitory anosmia when suffering from a severe cold or allergies that plugged up his/her nose. But a constant lack of all scent, day in and day out? With a nose that is perfectly unplugged? It undoubtedly seems like an alien idea to a norosmic. While explaining life as an anosmic is difficult enough, explaining congenital anosmia is particularly hard because I have to get the idea through that I have never experienced scent during my entire life and all scent is absolutely incomprehensible to me. I simply cannot fathom what it is like. I will just stare blankly at you if you say, “Things smell like they taste.” That makes as much sense to me as “Things look like they sound” makes to a blind person (or to anyone at all!). Basically, trying to explain scent to me is like trying to explain color to someone with congenital achromatopsia or sound to a congenitally deaf person.


Here are a few websites on anosmia:


Celebrities who have publicly admitted to becoming anosmic via accident or illness:

Celebrities who are rumored to be anosmic:


Some literary resources:

For kids:

  • The Senses: Smell, by Mandy Suhr, Mike Gordon

  • Sense of Smell, by Carey Molter

  • Follow Your Nose: Discover Your Sense of Smell (The Five Senses), by Vicki Cobb, Cynthia Lewis

  • Piggy Smells Some Smells (The sense of smell), by Isabel Fonte

  • Smell (True Books), by Patricia J. Murphy

  • Smelling And Tasting (Senses and Sensors), by Alvin Silverstein


    courtesy of Ned Hugar

     

     

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