Clearing the Air

Trust me, it’s not very easy to do.

Many years ago, the scent of humanity was humanity itself. In time, the rich and powerful began to spray themselves with flower water or put flower petals in their pockets to mask their body scent. Fast forward to more recent years and we see the development of perfumes and colognes. These were to more effectively cover the natural scent of the body.

Deodorents came along and made the natural odor of the human body more neutral. At the same time, scent was added to the deodorents because neutralizing the natural scent apparently wasn’t enough. Washing and drying clothes began requiring scent because the perception of clean is associated with flowery or oceany or baby powdery or whatever description of scent appeals to the consumer. Perfumes and colognes are huge business to the point that people who wear them as a matter of habit feel naked without them. Scent became an accessory.

Somewhere along the line, scent was added to everything. Cleaning products, personal hygiene products, hair products, and detergents are scented as marketing targets the insecurities of people who fear their natural or neutral scents. It’s just not clean if it doesn’t smell. As the various businesses grew and the demand for all things scented increased, the composition of the scents became more complex. Even “unscented” products are not odor-neutral; They just don’t have the flowery, oceany, powdery, whatevery scent added to them. Odor neutralizers just smell like chemicals instead of name-a-scent.

Add the obnoxiously enormous variety of personal scents to the range of chemicals in the environment – think pesticides, building products, gasoline/diesel particulates, smoke, and whatever else is floating around out there – and you get a recipe for disaster. From the grand scale air pollution to the perfumed lotion used by the coworker who sits a few feet away, clearing the air has never been more difficult.

According to the CDC, the number of people with asthma is increasing every year, many of them children. About one in twelve American adults have asthma and one in ten children. Asthma alone costs the US approximately $56 billion a year. Yes. That’s billion… with a B. And that figure was from a few years ago. The numbers for COPD aren’t any better. It’s the third leading cause of death in America. Emphysema… Allergies… Pneumonia…  Various infections… For those of us with any of these, the saying shouldn’t be “gimme a break”; It should be “gimme a breath”.

You’ve probably heard of the items on that list of breathing problems. There is another one that you might not have heard of. It’s called Multiple Chemical Sensitivity (MCS). An estimated 13% of Americans have it (do the math, that’s more than asthma), and approximately 46% of those ultimately have to go on disability because the effects are so incredibly debilitating. People are not usually born with MCS (although there appears to be a genetic aspect of susceptibility); It is something that develops over time after a “trigger” that acts as a catalyst for the condition. The difficulty for me and my fellow 13% of Americans with MCS is that many believe that it is not real.

Not that long ago, the medical field believed that asthma was completely psychosomatic. It’s been in the last fifty years that this myth has been busted. MCS is in that boat now. It’s not new. I’ve found resources dating back to 1972 that cite sources published on the subject even before that. Thanks to some early work by author Alison Johnson and those like her working to raise awareness, more and more people have had that aha moment that replaces the mystery of “what the heck is wrong with me?” Rather than a complete dismissal of MCS, there are now those in the scientific world who are beginning to understand and try to help.

So, now that you know how many people have it, you are probably wondering what all of it means. MCS, put simply, is the sensitivity to a variety of chemicals. Different people react differently to various types and strengths of chemicals. What seems to be a common factor is an event or series of events that start the whole thing off.

For me, it was working at a plant nursery when I was in my early twenties. I sprayed pesticides and growth inhibitors and fertilizers as instructed, without understanding that the safety equipment was inadequate. Sure, I’d use the PPE (Personal Protective Equipment) when spraying, but then take it off before going right back into the growing zones, exposing myself to the exact same chemicals I was just protecting myself from. Frequently, I’d find three legged frogs or two headed lizards in the drain ditches. That should have been a major red flag that working at this place was bad for my health, but I was happy to have a job. I had to leave the job when I began having migraines. The migraines were so horrible that I could not move or speak or even open my eyes. After missing too much work, I left. I gave no notice. I simply could not get out of bed and when they called to find out where I was, I told them I would not be coming back. After I quit, the migraines stopped.

As time went on, I became more sensitive to smells than I was already. I had always had a profoundly powerful sense of smell. My husband calls it my superpower; a friend calls it doggy-nose. It became problematic when adult-onset asthma crept up on me. My asthma kept getting worse and smells were sure to trigger asthma attacks. Smell wasn’t the only thing that triggered me, but it was the most common. When exposed to a perfume or other chemical scent, I have four seconds before I quit breathing. Four. Seconds. That’s as long as it takes the average person to read this sentence.

Let me elaborate with an incident that happened less than a year ago: I’m singing and directing the choir at my church with my back to the congregation. A woman wearing perfume walks behind me. I can’t see her and have no warning (not that it would help). My husband sees her but is unable to warn me. He counts after she walks by… one… two… three… four… I quit breathing. I just stop. My throat closes up and my chest constricts and I choke on nothing. I start to panic (this happened before I learned how to remain calm). I have no control over my own body. I stumble back against the wall and slide down, trying to gasp for air. My eyesight swims and my fingers start to tingle. The sound of my heartbeat throbs in my head and chest while well-meaning people gather around me to see if I’m okay. The cloud of her scent is still in the air. I motion for them to take me outside.

When they finally understand, they have to practically carry me out. The fear and pain (not to mention the embarrassment) are swarming in my head like a thousand angry hornets. I start to get strands of air through my constricted windpipe and accept my rescue inhaler, struggling to get enough of it in to start working. This is a trick because to use a rescue inhaler, I have to be able to breathe in the medicine. If I’m not breathing, the medicine just stays in my mouth (eww). Now I’m sitting against a pillar on the front steps of the church with people bustling about me and making a fuss. A few of them are wearing perfumes and colognes, which exacerbates my condition further. I have to choke out a request for them to move away from me, embarrassing all of us. After all, they are trying to help. Slowly, I gain control and start raggedly breathing again. Almost an hour later, I can stand (shakily) and head home with my husband driving.

About two hours after the incident, the rebound hits me. I black out where I sit. One moment I’m looking at Facebook and the next moment my husband is shaking me saying that I’ve been passed out for four hours. I can’t move. I’m in the exact same position I was sitting in and my whole body feels like it’s made of metal. Seconds after, my head explodes in pain. The following migraine endures through medication and I feel sick from it for several days. I don’t feel quite right again for about a week, and Heaven help me if I come into contact with anyone who has so much as a mild cold during that time. I will get sick. It’s a given. Not only will I get the cold, but it will evolve into bronchitis before it’s done, if not worse.

This scenario is my normal. I know how long I have between exposure and reaction, then between initial reaction and rebound. I do not want an ambulance. There’s no point to one, really. I know what’s happening and what will happen after. Avoidance is my only hope. I don’t go into detergent aisles in stores. I don’t enter stores like Bath & Body Works. I avoid people who I know wear perfume or cologne. My children know the reaction and what to do.

One of the most common things I hear when I put on a mask or try to remove myself from a situation that is triggering my MCS is “well, I don’t smell anything.” This is usually said in a tone rife with skepticism or outright disbelief. Consider that there are some people who are born completely blind. There are also those who are born with such an acute sense if sight that they perceive shades and hues of colors that the average person cannot distinguish. There is also every possible variation between the two extremes. Now apply that to a sense of smell. For someone who is not sensitive to smells, the smell might be slight or not perceptible at all. Biologists have found that after five minutes of putting on scent, the wearer becomes desensitized to it, i.e. people don’t continue to smell themselves. I do.

The other thing I hear quite a lot is “I only wear a little.” Imagine this situation: My child comes home from the first day of school with a letter saying that there is a child with a serious peanut allergy in his class, so there will be a ban on all peanut products to ensure the safety of this child. Darn… My child loves peanut butter crackers. It’s one of his favorite snacks. I decide that a little bit won’t be a problem. After all, this peanut allergy thing is blown out of proportion and that kid’s problem should not be allowed to effect my kid’s snack time. I send peanut butter crackers with my kid the next day. Now think about this: What gives anyone the right to blindly determine the severity of another person’s allergy or condition? What if the action severely hurts or kills the person with the allergy or condition? What makes one person’s choice to ignore a policy more important than another person’s well-being? Peanuts or perfume, if it’s dangerous for another person, what’s the difference?

There is no cure. There is no pill to make it go away. When I’m wearing a mask or have to leave a situation for self-preservation, I am watched like I’m a freak. I’m blamed for inconvenience. I’m ostracized because many people do not want to give up something they perceive as harmless. I seem unfriendly. I don’t mean to. I don’t dislike people, I just can’t let myself be exposed to the chemicals they use. This is not all a ‘poor-poor pitiful me’ thing. It is, instead, a glimpse into a condition that is worsening and becoming much more pervasive.

Believe me… I wish it could be different. I would give almost anything for a new normal. As it is, I and others with MCS just have to work for awareness and hope for understanding.