Imagine you are in a foreign country. Perhaps you've visited this place as a child and have a vague recollection of the journey. Maybe it’s the first time you visited and you don’t know the language or customs. You are a stranger in a strange land, hoping that the rules of immersion will hold true and that by being forced to adapt you will eventually develop the skills needed so you can feel like less of an outsider. It never happens.
What you’ve just read parallels the experience of the anosmic in the smell world. People with anosmia inhabit the same terrain as those who have a functional sense of smell, but are not able to physically relate to the experience of smelling. Though the acquired anosmic and congenital anosmic may differ when it comes to feelings of loss caused by the absence of the sense of smell, both may experience feelings of being an outsider when in truth they are misunderstood by the general and medical population. A blind person and a deaf person are easier to diagnose on sight versus a person who can’t smell. It’s ironic that a prejudice of sight has caused science to turn a blind eye towards funding anosmia research, though some of this is beginning to change due to advances in neurogenetics and the association of anosmia with early onset Alzheimer’s and Parkinson’s disease.
Many who are born with a sense of smell, who lose this sense due to disease, physical injury or the aging process, pine for its return and struggle to integrate the absence of smell with their identity. Acquired anosmics commonly struggle with anxiety and depression because they are in a state of grief due to their loss. The struggle is compounded by the fact that smells are hard to describe and once the sense is gone, developing an olfactory vocabulary is quite difficult. Imagine losing a person you loved dearly and not being able to revisit your memories of them because suddenly the reference points for those memories are no longer accessible, no matter how hard you try to find them. The experience of the acquired anosmic can be painfully frustrating and isolating.
Smells are processed in the limbic system, the emotional part of the brain that is tied to memory. This makes smells difficult to describe. When you smell something your brain tells you if you’ve smelled the aroma before, if it indicates danger, will provide you with memories of past experiences associated with that aroma, and will simultaneously imprint new data within the context of your present smelling experience. It happens in a flash. The more conscious you are of this process the easier it becomes to develop an olfactory vocabulary, something many struggle with for fear of being ridiculed for their choice of words. In truth, there are no wrong descriptions when it comes to smell; your unique life experience serves as a guidepost. The rest requires a good thesaurus and a look at a few flavor wheels for reference. If you chose to share smell experiences with friends your enjoyment will grow exponentially. The act of sharing sensory impressions of any kind creates memorable social bonds.
Both congenital and acquired anosmics are incapable of experiencing "flavor", as taste and smell work together to produce the sensation of flavor. Imagine the taste of a casserole with only sweet, sour, salty, bitter and umami receptors as your translators (pinch your nose while eating and you will get the picture). There is a little known fact among those who can and cannot smell. The sensation of texture, temperature and spiciness is connected to the trigeminal nerve. These “sensation” based experiences are capable of producing pleasurable emotions and foods that stimulate the trigeminal nerve are often quite enjoyable for anosmics and their smelling brethren.This is why there are so many flavors of toothpaste, gum and hot sauce on the market; each product is, in a sense, trying to get on your nerve. Some examples of trigeminal taste stimulants are mint, cayenne pepper and Sichuan pepper.
In the past few months I have been permitted to participate in anosmic communities on Facebook and have had conversations with anosmics on Twitter. I did not withhold my smelling abilities and made many interesting acquaintances, sharing meals with some of the people that I met. I learned to appreciate taste and trigeminal sensations even more because of this. Glass Petal Smoke has always been a trusted source of inspiration and learning when it comes to smell and taste. As we get closer to Thanksgiving I hope you will take the posts you’ve read on anosmia to heart; especially this one.
It's important to remember that everyone will lose some of their ability to smell as they age. We’re living longer now so it would be in the best interest of all to understand anosmia and get to know those who are living with it. Don’t rely on your eyes to lead you. Seek anosmics out by using social media and get in the conversation. Practice gratefulness and become an advocate for those who lack the sense that brings you to the pages of Glass Petal Smoke in the first place. You will appreciate your sense of smell more and might even make a few friends along the way.
It's important to remember that everyone will lose some of their ability to smell as they age. We’re living longer now so it would be in the best interest of all to understand anosmia and get to know those who are living with it. Don’t rely on your eyes to lead you. Seek anosmics out by using social media and get in the conversation. Practice gratefulness and become an advocate for those who lack the sense that brings you to the pages of Glass Petal Smoke in the first place. You will appreciate your sense of smell more and might even make a few friends along the way.
Notes & Resources:
Anosmia in early onset Alzheimer's and Parkinson's disease often manifests as loss of appetite. The connection to smell is often overlooked and doctors often run tests related to what they suspect is causing weight loss. If you have an elderly relative make sure to keep this in mind if loss of appetite becomes symptomatic. More often than not even the patients themselves don't know that their sense of smell is affected. They simply feel that food doesn't taste good anymore.
Anosmia in early onset Alzheimer's and Parkinson's disease often manifests as loss of appetite. The connection to smell is often overlooked and doctors often run tests related to what they suspect is causing weight loss. If you have an elderly relative make sure to keep this in mind if loss of appetite becomes symptomatic. More often than not even the patients themselves don't know that their sense of smell is affected. They simply feel that food doesn't taste good anymore.
The following posts on anosmia appeared in Glass Petal Smoke this year:
The Sense of Smell: Using it or Losing it (with podcast)
Anosmics of the World Unite and Congenital Anosmia are Facebook pages filled with interesting conversations written by and for those with anosmia. If you are an olfie (one with functioning olfactory skills) out yourself and find out what it is like to live without a sense of smell. You'll need to be a Facebook subscriber to participate. The Senseless Life, by librarian Helen Azar, is another anosmia page on Facebook. It focuses on Ms. Azar's journey to regain her sense of smell (which is possible, to an extent, if the acquired anosmia is not caused by a head injury which severs the olfactory nerves).
The Simian Line: Anosmia, a website created by Jennifer Boyer (a congenital anosmic), is rich with content and resources, and is written from the perspective of someone born without a sense of smell. If you are struggling with anosmia or want to know more about what it is like to live with this sensory deficit, pay her site a visit.
The Anosmia group on Yahoo is a great place for anosmics to find support in a peer-to-peer environment. You'll need a Yahoo alias to join the group which was established in 1999. [Yahoo Groups are no longer supported on the platform effective 2019. This information is here to illustrate how early the group formed.]
The Anosmia group on Yahoo is a great place for anosmics to find support in a peer-to-peer environment. You'll need a Yahoo alias to join the group which was established in 1999. [Yahoo Groups are no longer supported on the platform effective 2019. This information is here to illustrate how early the group formed.]
Navigating Taste and Smell Disorders by Dr. Ronald DeVere and Marjorie Calvert is a must-read for those with smell and taste disorders, the medical community and the general population interested in how taste and smell function. The book pulls no punches and is written with compassion as Dr. Ronald DeVere, a neurologist, is an anosmic who runs a taste and smell clinic in Austin, Texas. (P.S. Navigating Taste and Smell Disorders includes recipes!)
Jana Svoboda LCSW is a therapist who is living with acquired anosmia. Her compassion, candor and perspective are truly moving. You can find posts related to anosmia by searching the term "anosmia" on Door Number Two, her blog.
Illustration of anosmia is from Enfermidades. All rights revert back to the owner.
Jana Svoboda LCSW is a therapist who is living with acquired anosmia. Her compassion, candor and perspective are truly moving. You can find posts related to anosmia by searching the term "anosmia" on Door Number Two, her blog.
Illustration of anosmia is from Enfermidades. All rights revert back to the owner.
Glass Petal Smoke conducted the first fragrance brief on Twitter with a focus on creating a trigeminal perfume that could be sensed by people with anosmia. The result of this collaboration will post in December. Kedra Hart of Opus Oils is the creatrix and designed the perfume for her mother who acquired anosmia after sustaining a head injury.
This post is dedicated to Kathleen Cochran, a dear friend who has taught me more about life than anyone I know. Kathleen, I salute you and your tenacity as you live with Parkinson’s disease every day knowing that one day, you might lose the sense you love the most; your sense of smell.
