My Mask and I
Wearing an MCS respirator in public
by Jerry Evans
I have severe multiple chemical sensitivity (MCS). When I go into most stores I have to wear a respirator. Otherwise my sinuses quickly get irritated and my brain gets foggy as if I have the flu and haven’t slept all night. That effect can last for days.
In the early years I tried to sniff out each store or office to decide whether I needed to wear the respirator inside or not. And I only shopped at odd hours to avoid people wearing chemicals in their clothes and on their bodies. But it didn't work so well. I can get sick from fumes I can't smell and it can take fifteen minutes before I get dizzy. The dizziness doesn't just clear up again once I go outside.
I’ve worn a respirator for more than twenty years so it is completely normal to me.
It is interesting how people respond. The vast majority handle it really well, but there have been some interesting responses.
Mostly people briefly show surprise on their face when they notice me. Then they quickly avert their eyes and continue on. It is rare anyone says anything.
Children are much more spontaneous. Some just stare at me with big curious eyes. Some tug at their mommy’s pants, “Mom, that man!” Mom then either hushes up the child or gently explains that the man over there probably has allergies.
Sometimes I just gently wave to the child. That seems to work well.
A few times, when I was already next to the child, I crouched down and took off the respirator. I briefly explained that I use it to breathe. Then I put the respirator back on and slowly back off. In each case I’ve gotten a smile from the parent which showed a combination of relief, embarrassment and kindness.
It only happened once that two teenagers made funny faces. That didn’t bother me.
Occasionally people quip that they should wear one too in “this toxic store.” This included some store employees. Some have even asked where to buy one.
It is only a couple times a year that people actually want to talk to me. Equally rare is that someone directly ask if I have MCS.
I’m not really interested in long conversations inside a store, but I don’t mind exchanging a few sentences. I am not looking for any sort of heated exchange.
A middle-aged man asked me if I had MCS. Then he told me he owned an extermination business. When I just made a neutral reply the interaction soon ended. I wonder why he approached me. He obviously knew about MCS so he probably also knew that his livelihood is deadly to people like me. Was he trying to “bait” me? Was he hoping for a heated exchange? Did he just want to see what “one of them” was like? He didn’t act hostile.
I’ve only had a few hostile encounters. Once in a hardware store a man stared at me from a distance. He first seemed surprised, then he looked hostile and walked over to me demanding to know what I thought I was doing. I briefly explained and without a word he turned around and angrily walked away again. No idea why this upset him.
In another hardware store, small-town Kingman Arizona, an employee looked at me suspiciously. It was a locally owned store that allowed the employees to smoke while they served their customers. My respirator did not protect me against the smoke, but it was the only store in town at the time.
He asked me if I was one of those people who wanted to take his right to smoke away from him. I had no ideas what he was talking about and just shook my head. Soon after I learned that the Arizona legislature was debating whether to ban smoking in public places. It eventually did, as one of the very last states to do so. The hardware store became smoke free too, though I still avoided it.
Hardware stores are tough. The air is really polluted with gases from all those toxic building materials. I used to be limited to 15 minutes inside, even with the respirator, before my mind glazed over. Then I tried other filter cartridges available for my respirator, and one allowed me to be inside the same hardware store for about an hour (even two if my blood sugar was high).
The filter cartridges last about 3 months of weekly shopping trips. Then I start noticing the smell of some peoples fragrances. Not enough to make me sick, but it is time to change the filters.
I used to write the date I changed the cartridges in the little field on the side. Then one day a busy-body employee in that same Kingman hardware store said my respirator was useless. The cartridges only last four hours, he said. His intent was clearly to tell me I was insane and couldn’t tell if the respirator helped or not.
It was that smoky Kingman hardware store again and I was in a hurry to get out. I was not in the mood to explain that the four hour limit was for a painter exposed to much higher levels of toxic fumes that would saturate the filter material much faster than the store fumes did. I think I gave him a rather abrupt answer along the lines of “you have no idea what you are talking about” as I walked out the door into the fresh air outside.
I am conscious that it is important to be friendly and unintimidating towards other people. People would otherwise quickly stereotype that people with masks, or who have problems with indoor air, are all a bunch of unpleasant people. Or worse.
I try always to look as non-threatening as possible. I do that by walking rather slow and never in a hurry. And I always bring a shopping cart into the store, even if I just need one or two items. I think that makes me look more “normal.” A terrorist doing a gas attack would probably not bring a shopping cart. The cart is also helpful if I need to keep more distance to someone in the checkout line.
I lived near Dallas when the September 11 terror attack happened in 2001. I noticed in the following months that people paid more attention. At the Whole Foods store someone nervously asked if I knew something she should know about. I just shook my head. Before that, the only comment I had gotten there was from a cashier, who simply stated that I must be one of Dr. Rea’s patients, which I was (Dr. William Rea operated an MCS clinic nearby for many years.)
A couple months after the attack we were four people passing through downtown Dallas on the freeway. Three of us wore masks or respirators. I sat on the right side of the back seat and noticed a patrol car pulling up along our right side. The officer stared directly at me and then took a real close look at all of us. I expected he’d pull us over, but then he sped up and pulled away. The others in the car didn’t even notice. Presumably our calm told the officer we were harmless.
Around that time I was sent to a doctor to be evaluated for my disability case. He specialized in these evaluations and didn’t have any office staff. He had forgotten the appointment and wasn’t in his office, which was located in an office building with stinky carpets in the corridors. I waited outside the building, and every ten minutes I put on the respirator and walked in to check if the doctor had arrived. People from other offices noticed this traffic and called security. Two beefy guys showed up and were very suspicious. They were not very smart about it, but they were just doing their job at the time of high concern. And they called the doctor at his home so we could have the appointment. The security men released me once the doctor arrived.
In all these years, there have only been two really bizarre reactions. One was in an office supply store where the entire staff followed me around. They each had an earpiece with an intercom and obviously used it to make sure that whenever I walked into a new aisle there was someone already there, besides the guys who took turns hovering behind me. When I checked out, the cashier nervously asked if I was a terrorist. It was really comical.
The other bizarre response was at a gas station. I was wearing my respirator and gloves while putting gas in my car, when a woman pulled up behind me in a big SUV. When she saw me she locked herself in and stared intently at me as if I was a little green man from Mars refueling my flying saucer. She didn’t come out until I was driving out again.
Then there were a young couple who both wore masks themselves. They were deeply into a common conspiracy theory that the government was spraying us all on a daily basis with toxic chemicals from airplanes. They fully assumed I was wearing my respirator for that reason.
The Covid-19 pandemic was the great equalizer. Now most people wore a mask inside stores and mine didn’t stick out as much, except for being larger. People assumed I wore it solely for virus protection and some even asked where they could get one themselves, as they thought it must be more protective (I don’t know if it is).
That lasted only a few months here in rural Arizona where I live. People soon rebelled and refused to wear masks. Even when the local Walmart had signs and three employees at the entrance handing out free masks, the majority of customers refused to wear one. But nobody ever said anything to me about me “still” wearing one. The most I got was a “you must really be afraid of the corona virus.
When the swine flu virus came around some years ago, some people must have speculated that I had the virus and wore the respirator to protect others. One time I put it on as I was entering a small store a young man standing outside got startled and exclaimed: “the swine flu guy!”
Put together, these incidents seem more menacing than they really are. They happened over more than twenty years. Wearing a respirator in public is as normal to me as wearing a coat or shoes, but it took some years for me to get fully comfortable doing it. It really is no different from “wearing” a wheelchair or one of those oxygen nozzles.
Living in a small town helps. Many people have seen me before, and the other people here who have MCS. One of the storekeepers told me a few times customers ask him about me once I am out the door, and he just explains it to them.
About the author
Jerry Evans is the author of the two books Chemical and Electrical Hypersensitivity: a sufferer’s memoir and The Healthy House Quest (he receives no royalties from sales of his books). He lives in rural Arizona.
More stories about living with MCS are available at www.eiwellspring.org/facesandstories.html.