Why I Do What I Do.
It all started with a little YouTube video.
It was a cold, dreary February day in 2019. I was at my computer doing some research about the sense of smell on YouTube for a new online course I was developing. To be fair, the quality of olfactory content back then was abysmal, so I was scrolling rather quickly, unamused.
But not more than five minutes in, I came across a curious video that stopped me in my tracks, and would change the course of my work forever. The short film was called This is What It’s Like to Live in a World Without Smell by filmmaker Jacob LaMendola. I was intrigued, clicked play, and spent the next 9 minutes completely absorbed, learning about lived experiences far from my own. It was eye nose opening, to say the least.
When the video was over, my immediate reaction was shame. I was embarrassed that I had never considered the possibility of people living without a functioning sense of smell. I mean, there are people who can’t see and hear, so logically there are people out there who can’t smell, right?
I sat with this new revelation for a good minute. My mind was racing with questions, guilt, and curiosity, all at the same time.
Why had it never occurred to me that there are people living with no ability to smell?
I reflected on the fact that most of my adult life I’ve been surrounded by people who are actively smelling for a living. I spent more than 20 years in and around the fragrance industry after all. Isn’t everyone able to smell?
According to the National Institutes of Health, approximately 3% of Americans live with anosmia, and aren’t able to smell at all. That’s more than 10 million people!
Remember, in 2019 we didn’t have COVID yet. Nobody was talking about smell loss, or people not being able to smell. There was no evidence anywhere that there might be people around me not able to smell. Anosmia is an invisible condition and those affected, I soon learned, live in silence and often in isolation.
A few days later I reached out to Jacob to tell him how profoundly his short film had affected me. I wanted him to know that his work mattered and thanked him for his important creation. I had a chance to finally talk to him on my podcast in 2022.
Of course, the following year, in February 2020, everything changed when COVID-19 spread around the world. Smell loss was a key early indicator of contracting the virus. Millions of people were discovering that the sense they had taken for granted was no longer accessible to them, and their world was now grey.
I wanted to help and reached out to the UK charity Fifth Sense, one of only a few organizations that was providing support and advice to people affected by smell and taste disorders at the time. I began doing free smell training classes, and became a global ambassador for them, with my primary role being to bring awareness about smell disorders to the smelling community.
I tell you all of this because today is Anosmia Awareness Day, a day which shines a spotlight on those living with no ability to smell.
It’s been six years now since I first learned about anosmia, and as a person with “smell-ability,” my aim remains to bring awareness and compassion for those affected by the inability to smell. My goal is to bring closer those who have the privilege to smell with those who are unable to smell because, through perspective, we can all learn from, and support, each other.
I believe that one of the most effective ways to do this is by recognizing the role our sense of smell plays in our everyday life. To appreciate how it keeps us safe, brings us closer to others, gives our everyday experiences dimension, connects us with the past, and allows us to fully enjoy the food we eat.
“If you get everyone to focus on their sense of smell we all win, especially those with a smell dysfunction. Why is that? Because when you understand the value of something,
you’re more likely to empathize with those who’ve lost that thing.”~ Frauke Galia
I want my Substack to inspire you to explore the countless possibilities our amazing sense of smell has to offer. I want it to give you new perspectives and allow you to actively use your nose to be more curious about the world around you.
As James Baldwin so skillfully articulated, “You write in order to change the world ... if you alter, even by a millimeter, the way people look at reality, then you can change it.” Exactly that.
It’s also why I started my podcast, An Aromatic Life, in 2021. It became glaringly obvious to me that we live in a world dominated by sight and sound, and that the under- appreciated sense of smell was being willfully neglected.
Speaking of which, I invite you to listen to this week’s episode of An Aromatic Life, where I sat down with acquired anosmic Katie Boateng and congenital anosmic Dia Kline to discuss the state of anosmia five years on from COVID.
Katie and Dia give their report card for general public awareness, the anosmia community, doctors, and the scientific community before the pandemic, and where they believe we stand today.
They share what it's been like navigating life with no sense of smell since anosmia was finally “put on the map”. And they talk about how to best continue to get the message out about anosmia and what ONE thing needs to be done to really, truly make a difference.
They also share what they hope to see happen in the next 5 years, and tell us how we ‘smellers’ can best support the anosmia community.
You can hear this episode on Apple podcast, Spotify, Amazon Music, or wherever you get your podcasts.
Even More Curious?
If you’re interested in hearing first-hand accounts of life with a smell dysfunction, check out these An Aromatic Life podcast episodes:
#2: A World With No Smells w/ Dia Kline
#9: The New Smell & Taste Association of North America
#15: A Journey of Smell Loss w/ Fifth Sense Founder Duncan Boak
#30: Living with Parosmia
#34: Living with Hyperosmia
#46: Anosmia Awareness w/ Jacob LaMendola
#52: On Being a Designated Nose
#71: Holiday Strategies for Anosmia, Hyposmia, and Parosmia
#92: Connecting with Everyday Smells When You Have Smell Loss w/ Katie Boateng
I’m extremely grateful for each of you in this community. And I hope that, as I begin my second year on this platform, I can continue to inspire you to use your nose in new and interesting ways.
Happy Anosmia Awareness Day!
With aromatic wishes,
Frauke