WALK A MILE IN MY SHOES PLEASE
I’m an environmentally ill, chemically sensitive person living in the toxic landscape that is our modern world.
But what does that really mean? Allow me to share a glimpse of my life to provide insight into the reality of living with chronic illness. There are times when I long to do the simple things that others take for granted, to feel normal, and I find myself going to great lengths to pretend that I can.
For those of us who are chemically sensitive, asthmatic, or need to avoid fragrances and chemicals, even the thought of travel can be overwhelming. What should be a simple pleasure becomes a daunting, often exhausting task fraught with challenges others might never consider. Whether it's a necessary trip for medical treatment, business, or a much-needed vacation, the journey is anything but straightforward. Every step of the process—from packing to navigating public spaces—requires meticulous planning and constant vigilance. There are many obstacles, and the stakes are high, turning what should be an exciting adventure into a stressful ordeal. What if you just simply want to go on vacation?
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It’s winter in Massachusetts, the slow season for your business, so you can finally take some time off and go on vacation - someplace tropical. You can almost feel the sun's warmth on your skin and the sand between your toes. What are you waiting for? Just hop onto the internet and book a trip for yourself, right?
Not so fast hotshot - you are facing a multitude of obstacles.
No matter where you go, you will need to pack your clothes, so what are you using for luggage? Does it smell like nothing, or did it absorb odors and chemicals from the airplanes, hotels, etc., of previous trips? These places routinely spray chemicals for all kinds of reasons, including insect control, cleaning, and what they call – deodorizing, all of which tend to contaminate luggage.
It’s challenging at best, and sometimes impossible, to remove these contaminants, so if you need new luggage, which tends to be chemically offensive, did you think about buying it months ago to let it off-gas its new smell somewhere out of your living space? Even then, it probably still somewhat stinks like chemicals. In the worst-case scenario, you line your suitcases with bath towels, hoping your clothes won’t pick up those contaminants.
Have you decided on a destination? Maybe you read that the best beaches in the world are in Turks and Caicos, and you are daydreaming about that famous baby powder white and pink sand. So you start looking, but there are no direct flights from Boston to Turks and Caicos. You would have to change planes no matter what. Are you up for that? Traveling is difficult enough because of your sensitivities. Are you willing to suffer through that extra leg of travel? I didn’t think so.
You run into a similar problem with many Caribbean islands. Hawaii and the South Pacific are, of course, out of the question. After extensive research, you narrow down a list of tropical destinations you can reach in a nonstop flight from Boston. You decide on Aruba.
Now, all you need to do is find lodging. Will you stay in a hotel, a resort, or an Airbnb? Of course, you must make countless phone calls and send many emails to find one that uses fragrance-free laundry products. Responses are sporadic, and often, the people you are corresponding with either clearly don’t know what is being used at their property, or worse, they are just obviously telling you what you want to hear. Your excitement at deciding on your destination starts to wane as you repeatedly come up empty.
Experience has taught you the hard way that it’s not an option for the establishment to just wash the sheets in fragrance-free detergent before your arrival. Scented laundry products infiltrate all textiles in a room, generally at a level that makes them toxic to you indefinitely, even if the sheets are washed in “free & clear” before your arrival. These products do not just wash out; they are designed to be sticky and are almost impossible to eliminate. And it’s not just the linens that are the problem. Mattresses, furniture, carpet, drapes, all the textiles, and soft or porous surfaces will have absorbed these chemicals, making the room a toxic soup that is uninhabitable to you. You need to stay somewhere that only uses fragrance-free laundry products all the time, and ideally has no carpet in the room, just to have a fighting chance of not getting sick.
You struck out with Aruba, so it’s back to the drawing board. Finally, you find a resort in Puerto Rico that can confirm they use fragrance-free laundry products. Now you can book a flight.
Can you afford a first-class ticket so you'll have more space around you with less chance of secondhand fragrance from the other passengers? If you are going to be in the main cabin, it will be a very problematic and miserable flight. Passengers in first class also tend to have more access to the flight attendants, so if you have special needs or requests, you are more likely to have better results. Also, you will be the first to deplane, which will get you the hell off the plane faster. You will be so desperate for clean air to breathe by the time the plane lands that you are ready to commit murder.
On the other hand, you don't want to sit too close to the lavatory, which can contain offensive chemicals. The exact location of your seat needs to be a very strategic decision.
What if there is no first-class or you can't afford it? Are you traveling alone or with a companion? When you are crammed in like sardines in the main cabin, how do you keep a safe bubble of personal space around you? You need to buy at least the seat next to you and hope that the person sitting in front of you doesn't have hair spray on or worse.
If the airline doesn't have first class, you can try to buy a seat in the first row so you won't have people in front of you, but you will be very close to the lavatory. Is that better than having someone with hairspray recline their seat so the back of their head is right in your face? How do you choose? You would never buy a ticket on an airline that does not allow you to choose your seat in advance; that would be a nightmare.
Finally, you book a flight. The good news is that this has turned into a family vacation, and you, your spouse, parents, in-laws, and other assorted family members are all going together. Everyone is excited about this trip because they know it is a big deal for you to make this happen. You bought main cabin tickets because you could select your seats and surround yourself with your family, building a bubble to buffer you from the other passengers. Problem solved.
The day of the trip arrives. Everyone else is super excited, but your anxiety is through the roof. You hope and pray that you will get through this day without too much pain and discomfort. You are determined not to be difficult and ruin the trip for your spouse or your family. You are quiet and subdued as you arrive at the airport.
You need to check in two hours before your flight departs. That means, once you've gotten through security, you will be trapped in the terminal waiting to board with hordes of people covered in every personal product imaginable. Your extended family is arriving separately, and they are running late. Do you set up camp at your gate, which is guaranteed to get very crowded in the hour before boarding? You will be back-to-back or next to people with laundry, hair spray, perfume, deodorant, after-shave, and more for the whole time.
It may be best to find an uncrowded spot away from the gate and other people, but will you then be the last one to board and have to stand in line forever with all of these people? You pray that your flight is on time and that boarding will go quickly and smoothly.
Eventually, your family arrives, and you allow yourself to be distracted by them. They are all happy and full of anticipation about the fabulous trip we have planned. You secretly are jealous that they have no anxiety or concerns about any part of this trip, only happy expectations.
Boarding goes quickly and without incident, and you settle in for the flight. With your family sitting all around you on the plane, you are somewhat insulated from the other passengers, and the flight is more or less without incident. The plane smells like cleaning products and bug spray, but thankfully, it’s only a four-hour flight, so you get through it with just a headache and some brain fog.
After you arrive at your destination, how are you getting to your lodgings, and how far away is that? You can't just rent a car from Budget, Avis, or any of the usual car rental companies because they spray their cars with fragrance as part of the cleaning process.
If you are renting from a private car company (much more expensive), you can probably negotiate with them to provide you with a vehicle that has not been sprayed with fragrance and also isn't brand new and still off-gassing new-car chemicals. It will likely have leather seats that have had ArmorAll applied, so hopefully, you can tolerate that. Or you could use an app-based car service. Can you request a fragrance-free Uber or Lyft driver? Taxis are a treacherous last resort, but on this trip it’s your best option from the airport.
You finally arrive at your resort, and it’s the moment of truth. Is this room fragrance-free or not? You instantly identify that even though the linens have actually been washed in fragrance-free products, there is new wall-to-wall carpeting in the bedroom that was not in the photos online. You are horrified because carpet off-gasses formaldehyde, which is one of your triggers. On top of that, they used something super scented to “freshen” the carpet, so the room is most definitely not fragrance-free.
You don’t want to ruin anyone else’s trip by making a big deal. You can always drag some bedding into the bathroom and sleep on the tile floor. Hopefully, you are not going to spend a lot of time in your room anyway. You think this is still salvageable, and since your only other option is to find alternate lodging or go home, you decide to try to stick it out. Perhaps it just smells overwhelming because you have been traveling and inundated with toxic exposures all day. Maybe you just need some fresh air.
You are desperate to get out of your room, go for a swim, and get some sun. It’s just early afternoon, so the day is not entirely ruined by travel. The pool is too heavily chlorinated for you, so your option is the beach. Of course, you can’t wear most sunblock, but maybe you found one that won’t make you sick. Now, you need to find a spot on the beach that is nowhere near anyone who might be spraying sunblock on themselves. You need to strategically place yourself upwind of anyone who might do that. Your family is being incredibly patient and nonjudgmental. They let you steer this ship.
Finally, you relax and have a fabulous afternoon at the beach. You soak up the sun and feel the sand between your toes just like you dreamed of. You look forward to dinner. Hopefully, your server and nearby diners will be fragrance-free. Did you review the menu for this place beforehand to see if they had any food you could eat? Like most chronically ill people you have a number of food restrictions.
They have an extensive menu at dinner, and your family members are all quite pleased. But for you, as a vegan who doesn’t eat gluten, your only option is a plain baked potato and a salad with just oil and vinegar. Fortunately, they have avocados in the kitchen, which you can get them to serve with your baked potato instead of sour cream.
It's depressing to have such limited dining options when you are on vacation. Still, you probably also factored that into your initial research of where you were going and know there is at least one restaurant nearby with interesting menu options that don’t break any of your food rules. Tonight, you’re too tired to find it and don’t want to inconvenience your family. So you quietly eat your baked potato and salad even though it looks like it came from a high school cafeteria compared to the extravagant dinners served to everyone else.
There is an exciting show at the resort theater later that everyone wants to see, but after the torture of traveling, you just can't face being in close proximity to other people. What if they just cleaned the floors at the theater? After all of the day’s exposures and triggers, you don't feel very well by now, so you return to your room to try to make the best of it.
Somehow though, the room seems even worse now than when you arrived. How did you not notice this earlier? You were probably in olfactory overload from the exposures at the airport and then the taxi ride to the resort. Even sleeping on the bathroom floor is no longer an option, as every surface seems to have been wiped down with scented cleaning products.
There is no way you can stay here. But you are already in Puerto Rico, and your family is here because you chose this place. You get on the internet and start looking at other lodging options; you can move to another resort or hotel – without uprooting your family.
You find a hotel nearby that might be better, so you decide to take a leap of faith and try it. They make promises to you on the phone about their rooms being fragrance-free. You move, leaving your family at the first hotel; not the worst-case scenario, but still not optimal. Upon arrival, you find plenty of cleaning product smells there too, but maybe it’s not as bad as the other resort. You try to suck it up and power through, and at first, it seems like it will be okay because it has a slider facing the ocean, so you think you could just leave it open all night and get fresh air from the sea. But the pool is just a few floors down, and the chlorine and chemical smells wafting in are too much.
You have now started to become very symptomatic and realize that if you stay here much longer, the physical price may be higher than what you can afford. As much as you had been looking forward to this vacation, you realize it’s time to pull the plug.
You spend the final wee hours of the morning on the internet booking a flight home. Defeated, as the sun rises, you arrange a car to take you to the airport. You leave your spouse, in-laws, and the rest of your family there to enjoy the vacation you selected and arranged – without you. Struggling physically, mentally, and emotionally, you fly home alone to get back to your safe bubble. You had hoped that this time it would be fun to go on a trip; you could be a tourist, a traveler even, and relax with the people you love. You had forgotten how impossible it can be. Will you ever be able to go anywhere again?
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These experiences have actually happened to me. Although some of the locations have been changed for continuity, this is an aggregation of actual events in my life. I took that flight home, leaving my husband and our family behind. Lonely does not even remotely describe how I felt on that flight. Somehow, this is what my life had turned into. How did it get to this point? And more importantly, what did I do next?
