This Caged Bird is Going to Sing
“If one has courage, nothing can dim the light that shines from within.”
Dr. Maya Angelou, I Know Why the Caged Bird Sings
If you’ve read my post on this site “All of Us are Canaries Now” then you are aware that the term “Canary” for chemically sensitive people is derived from the historical practice of coal miners taking a canary in a cage down into a mine shaft with them while working. As long as the canary was still alive and well, the miners assumed it was safe for them to go to keep working in the mine.
The canary bird is best known, however, for its beautiful song, which delights its listeners.
But those of us humans who identify as “Canaries” are less likely to sing. We have survived “going down into the mine shafts” of environmental exposures but we suffer from the effects of having been exposed to the toxic chemicals that abound in our modern world. Many of us are unwell and have no energy to “sing” about our plight. We communicate among ourselves but, for a host of reasons, do not spend much time trying to inform others about the risks of chemical exposures. Just getting through the day is trying enough for some Canaries.
Many of us share our experiences on social media and other insular groups in part because some family members, friends and colleagues often don’t understand our condition and so they stigmatize and exclude us. Some non-Canaries are hostile to the extent of accusing us of “faking” our condition to get attention, to get special privileges or to impose some unwanted constraints on them (like asking them not to wear scented products when they come to work or attend a family event.)
Many affected individuals do not even identify as Canaries. They may be aware that the scented candles or air fresheners in a neighbor’s house makes them feel nauseous; the laundry products on their co-workers’ clothes gives them an instant migraine; the essential oils in the health care provider or therapist’s office causes an asthma reaction; the smell of their friend’s shampoo causes flu-like symptoms that last for days; a trip to a large box store makes them feel dizzy and unable to think clearly; the use of scented soaps makes them break out into rashes that won’t heal.
But they may not have connected the dots yet that they are slowly, over time and with multiple exposures, becoming sensitized to chemicals because of the exposures that are low-level and chronic in their own spaces and the places they visit. Or that the reason they feel lousy after coming home from a doctor’s appointment is because of the hand sanitizer and cleaning product chemicals that permeate the building, and the chemical fragrances on the staff and the patients–not because they are coming down with a virus.
Most dieters don’t know that the reason they can’t lose weight may not be solely because they are eating too much or the wrong foods or not exercising enough. It may be because chronic low-level exposures to chemicals are messing up their hormones that control how their body processes food and metabolizes sugars and fats (fragrance chemicals are “hormone disrupters”.) They are at higher risk for not only obesity but diabetes than someone who avoids breathing in, ingesting or absorbing chemicals into their skin.
The Young and Pets are Especially Vulnerable
Young people are especially vulnerable to health consequences from exposures to scented or chemical products, but less likely to realize it. Many teens, for example, work in low-paying jobs or in manual labor that exposes them to chemicals:
- Like the young man taking payment from drive-up customers from his closet-sized space that doubles as the chemical storage area for the establishment, and who leaves work every day with a nosebleed.
- A young woman cleaning the tables with a scented spray of “sanitizer” in causes terrible rashes on her arms.
- The young man who uses several strongly scented products and suffers from recurrent migraines, causing him to miss workdays and lose jobs.
- The yard care worker spraying Roundup from a backpack, although it has been linked to lymphoma. (It was briefly taken off the market but is for sale again.)
Children, because their bodies are still developing and smaller than adults, are more affected by the same level of exposure that adults experience.
School children are affected by school absences and lowered grades due to frequent asthma attacks provoked by constant exposure to personal and cleaning products allowed in the school. Pre-schoolers are cared for by sitters or in childcare facilities are exposed to strongly scented products that cause many children to develop frequent colds and sinus infections.
Pets are more likely to develop skin and other cancers because they are exposed to the products in the owners’ homes, cars and grooming services. They have smaller bodies, so the chemical “hit” is more intense and impactful on them than on people.
Denial and Lack of Awareness are Powerful Determinants of Unhealthy Choices
“I’m just sensitive,” some people say to me. “I’m not as disabled as you are.”
Yet, I think. Give it time and more exposures, and you probably will be.
I’ve heard a lot of distressing stories from people who meet the clinical definition of multiple chemical sensitivities (MCS) because they are made so ill by any additional chemical exposures (even a short-term one) that they have become self-identified “prisoners in their own homes.”
A subgroup of Canaries have developed an even more serious condition: mast cell activation syndrome (MCAS), a disorder that affects the blood, immune and neurological systems in their body.
Many chemically/fragrance sensitive people have lost their jobs and income, friends, family and romantic partners, and so many of life’s necessities and pleasures that most people take for granted: going in a restaurant to enjoy a meal; visiting in person with family members; going shopping in a store; getting in-person medical care; attending a house of worship; buying a different car; using public transportation; staying in a hotel or motel; taking a trip; going to a live concert or other public event or special family occasions like a wedding or funeral.
Too many have joined the ranks of the homeless, after they lose their home for some reason and there is no safe place for them to go. Temporary housing programs, like Shelterforce[ii] are becoming more aware of the “invisible disability” of MCS and trying to make housing more accessible for people who have it.
Research also has confirmed a causal relationship between anxiety, depression and suicidal ideation (or attempts) and the condition of MCS/MCAS.[iii]
Below are just a few individuals I know who have developed MCS/MCAS:
- A woman who is contemplating telling her daughter, whose last visit to her house made her so sick she had to stay in bed for days, “It’s your scented products, or me.” (And her fear over which what her daughter will choose.)
- The flight attendant who was forced into early retirement because she developed MCS due to frequent overexposure to diesel fumes and the scented products of passengers.
- A dozen employees who were exposed to a chemical spill in their building and became permanently disabled with MCS.
- The woman with MCS whose scent-free SUV was stolen, so she has no vehicle. She cannot find a scent-free vehicle to replace it. It is nearly impossible to get the added chemical scents out of a new vehicle.
- The man who has had to live in his R.V. for the past year because a careless repair person sprayed a chemical product under his house, making it uninhabitable for him.
I’ve witnessed some exposure-related crises first-hand, one of them when I was taking my last plane flight ever. A small child with asthma stopped breathing on a five-hour airplane flight and had to be administered oxygen for the rest of the flight. The ambient scent level caused by the products of the other passengers on the plane (and the cleaning products used to spray down the seats) was so strong it easily permeated the thick N95 face mask I was wearing.
That event prompted me to have a conversation with the lead flight attendant about the level of scent in the plane, which was enlightening for both of us. He wondered what motivated someone like me to ever risk taking a plane flight at all? (In my case, it was the possibility it might be the last time I would take a trip to Maui with my seriously ill husband. As it turned out, I was correct.)
At the same time, I learned of the attendant’s concern for his own health and of his fellow flight attendants, who must work in an enclosed “toxic tunnel” of a commercial airplane every day to earn their living. He urged me to complain to the airline management on behalf of the flight attendants as well as affected passengers.
Fragrance issues affect other non-canaries as well:
- Like the young woman who finally had saved up enough to buy a nicer car, but then had to find another one because the seller decided to “freshen up” the vehicle with Febreze, making it unsafe for her and her young son to be in.
- A doctor who was made ill for the rest of his workday because of exposure to one patient’s strongly scented products.
- Many nurses who think their employer should establish a patient policy and enforce staff fragrance policies, but do not say anything to their managers because they “don’t want to make waves” or worse, lose their jobs.
Living in the Chemical Age
Since the onset of the Chemical Age in the 1950s, we have lived in a world increasingly contaminated by a synergistic mix of unregulated, untested chemicals. And it is making all of us ill, whether we know it yet or not.
Consumers are the involuntary guinea pigs of an uncontrolled, unsupervised experiment being imposed on us by product manufacturers, pushing the limits on how much chemical exposure the human body can withstand before the immune system gets overloaded and allows cancer, autoimmune diseases and other serious conditions to develop.
Some of us already know what’s happening to our bodies from our own experiences with being exposed to products with unregulated, untested synthetic (human-made) chemicals in them because of our predictable reactions to products to which we are exposed to on a daily basis.
Others may sense something is wrong but not know what is causing their health symptoms. Or they realize the harm that is happening but say nothing, because they don’t want to be singled out, discriminated against, lose a job, lose friends, become isolated from scent-using family members, lose their medical providers and other negative outcomes of being sensitive to chemicals.
People who knew me and Andy understood that we were chemically sensitive. A few knew how we became that way. My husband developed multiple myeloma (cancer of the bone marrow) because of an early exposure to ammonia mixed with other chemicals while working in an office setting, running copies all day during tax season, on an ammonia-based copy machine.
I have an autoimmune disease, MCS and MCAS caused by multiple chemical exposures during my lifetime: to pesticides and herbicides as a young child working in agricultural fields; to perfumes and colognes while working in the fragrance section of a large department store when I was a teenager; to chlorine gas after a six week exposure to the mixture of vinegar and Chlorox I was using to clean mold off a house exterior (and then to high VOC paint) in my early thirties; to propane gas leaks on several occasions since then; and to ethyl mercaptan (the chemical that smells like rotten eggs) when my RV propane tank ran out of gas during the night, seriously sickening me.
As a result of all those exposures, I now am severely chemically sensitive.
In order to be relatively healthy, I have to assiduously avoid additional exposures to chemicals in fragrances, petroleum-based products, any kind of smoke (from tobacco, wood-burning or wildfires), new building materials, air “fresheners” (now there’s a misnomer), scented personal or housecleaning products, laundry products (and anything else that is exposed to them), new vehicle smells, new books, mail and packages handled by scented delivery people, foods that are laced with chemicals in artificial flavorings, preservatives and dyes, and a host of other products.
Canaries Isolate Themselves for Health Reasons
Many Canaries and observers describe our situation as “being a prisoner in our own homes” because there are few safe places for us to be. We also must be constantly vigilant about defending our fragrance-free spaces to keep them that way so we can stay well.
As a result, Canaries who live alone are negatively impacted by loneliness and lack of social contact, which are known to be harmful to human health.
(In a future blogpost, I’ll say more about the logistical and defensive strategies, financial and social costs and what it takes for Canaries to go out into the world, obtain necessary services and products, and interact with scented people and businesses.)
Why Does the Caged Bird Sing?
Dr. Maya Angelou is best known for her poem “I Know Why the Caged Bird Sings,” which relates to societal oppression that causes some people to be free birds and some to be caged. Her poem speaks to the privilege of white people compared to people of color, but it also is relevant to the inequities between people who use and wear chemical products and the chemically sensitive people who are “oppressed” by them.
These lines are especially meaningful to me:
“… the caged bird stands on the grave of dreams his shadow shouts on a nightmare scream his wings are clipped and his feet are tied so he opens his throat to sing.
The caged bird sings with fearful trill of the things unknown but longed for still his tune is heard on the distant hill for the caged bird sings of freedom.”
Many of us canaries have had to give up our dreams, our careers, our freedoms, our loved ones, our friends and in too many cases our family members to feel well.
Many people view us, not the chemical overload in our environment or their own choice to use scented products, as the “problem.” As a result, many Canaries are stigmatized, abandoned, shamed, turned away from services, pathologized, and occasionally pitied.
Some of us are kindly accommodated by others so we can benefit from some measure of human contact and obtain the necessities of life, such as groceries, medications, vehicle repairs and medical care.
A few of us figure out how to retain some of our freedoms and protect our human dignity–but not without a struggle. To accomplish that feat, again and again, requires no small measure of courage, creativity, boldness and persistence.
It is exhausting of our time, financially costly and draining of our emotional energy.
Why Will I Spend Time Speaking Out about this Topic?
Once, when my husband Andy and I were having a marital spat in the car on the way home from yet another visit to a medical facility, he knew he had crossed the line by going parental on me:
“I don’t want to hear another peep out of you!” he shouted.
I was shocked into silence for a minute or so.
On the one hand, I was mindful that he was not in his right mind, because of taking high dose steroids, which made him impatient and short-tempered at times. (We called Dexamethasone “the Devil Drug.”)
But the strong-willed part of my psyche simply could not resist a rebellious reaction to that insult to my adult dignity. I decided the best response would be to take a humorous tack with him:
So, I said, softly: “Peep.”
Followed by: “Peep, peep.”
Then: “Peep, peep, PEEP!”
Soon I was loudly “Peep, PEEP, PEEP, PEEP, PEEPING” all the way home.
“OK, OK, I get it,” Andy said, laughing, as he pulled into our driveway. “I’m sorry I tried to shut you up.”
Now Andy is gone and my MCS is much worse after nine years of spending time in highly scented medical settings and serving as his designated “sniffer” of the medical staff before I would let one get near him. I also suffer from PTSD triggers and flashbacks, nightmares, heart-stabbing grief and other lingering fallout from the years of trauma from battling both his disease and the medical industry. Just managing my life now is difficult.
So, one might wonder, why I would ever take the time to write about the growing problem of environmental illness and MCS/MCAS?
Here’s why: How else will others learn about the dangers of chemical exposures, if they never hear a “peep” out of those of us who already have suffered harm? Of what value is a long-time Canary who will not warn others about the risks of chemical exposures?
This Canary is going to sing, for all those who care to listen and especially those who choose to take action to make the world and the air we share safer for all of us.
But despite the extraordinary limitations, challenges and emotional losses I experience as a result having MCS/MCAS, this Canary intends to be as much of a “free bird” as I can.
For no human being who lives in a cage can truly thrive.
Thank you for reading this and sharing it with others you care about.
Best wishes for your good health.
Evonne Hedgepeth, Ph.D. www.evonne.life
[First written in May of 2011. Updated and revised January 19, 2025.]
[i] The author wishes to acknowledge the author/poet Maya Angelou whose book I Know Why the Caged Bird Sings inspired the title of this post.
[ii] https://shelterforce.org/2023/06/28/making-housing-more-accessible-for-people-with-multiple-chemical-sensitivities/
[iii] Cui, Lu, Hisada, Fujiwara, Katoh, “The correlation between mental health and multiple chemical sensitivity: a survey study in Japanese workers” Environ Health Prev Med. 2014 Dec 11;20(2):123–129. https://pmc.ncbi.nlm.nih.gov/articles/PMC4597346/