Subtitle: Traveling When You are Allergic to the World
When you say something like, “I really hope I survive this trip I’m taking,” people assume it is hyperbole. I mean sure, we could all be hit by a car or struck by falling airplane shrapnel at any second, but in general, for *most* people, the actual possibility of death due to circumstances completely beyond our control is not a reality.
But when you have an anaphylactic and highly sensitive allergy to something that is found in body and personal care products, laundry products, water treatment chemicals, sanitizers, cleaners, fuels, and antimicrobial agents, it’s actually *not* hyperbole. I haven’t yet had an anaphylactic reaction to airborne–versus ingested–corn, but I’ve definitely had severe enough reactions (tongue and lip swelling) to demonstrate that it’s a possibility. So yes, I could literally die due to what someone else is releasing into the air via machinery or aerosol. That could realistically happen.
It’s pretty heavy when you really think about it, and I have no advice for coping with the weight of that. I just mostly do what I have to do and try not to think about it. I have my precautions in place as far as taking preventative medications and carrying emergency medications and gear on my person at all times and hope for the best. Once the precautions are in place, I mostly cope by just pretending it’s not happening.
I do well enough most days. There are a lot of things I’m not able to do anymore that I used to be able to, such as eating in restaurants or drinking in bars, and while I’m not happy about that, there really isn’t much to be done so I don’t see much of a point in complaining about it. I just do what I have to do.
As much as this allergy has shaped my life, I still don’t have to be entirely defined by it. I still have my hobbies and my career, at least mostly. Researching my health issues to figure out the next step to take takes up more of my time than I’d like, and I honestly can’t focus on work 24/7 the way I used to, and I can’t go out to lunch or happy hour with my coworkers or potential employers, so networking gets a little awkward. But I’m doing okay so far, for the most part.
One of my hobbies in the past has involved world travel for specific events related to my music fandom. In particular, I have gone to the same music festival in downtown Baltimore, Maryland every Memorial Day weekend since 2010. I started making plans for the 2013 festival almost as soon as I returned from the last one in 2012 . This year the possibility of being able to make the trip safely was looking pretty slim, though. I started getting more sensitive to traces of corn in food right after I returned from the festival last summer, and by midwinter I was reacting to more foods than I didn’t, and even reacting to *water*. I was unsure as to how I could possibly navigate a cross-country trip safely.
But you know, I’m pretty stubborn and pretty resourceful, and this was really important to me. So I made it happen. Here’s a breakdown of the challenges involved for me.
Hotel detergent and cleaning products
Problem: *Most* detergents and cleaning products contain corn-based chemicals. Bedding or clothing washed in corny detergent gives me a rash, and corny cleaning products give me asthma and itchy eyes.
Solution: I contacted the hotel ahead of them and told them I had Multiple Chemical Sensitivy (MCS). This isn’t true, but it is more meaningful in this situation than “allergic to corn,” so that’s what I said. They said that they had a protocol for this and would use “non toxic” and “unscented” products when cleaning my room. I also packed my own sheets, blankets, pillowcases, and pillow allergen covers with me in my suitcase, and brought a compact HEPA air purifier with me.
Analysis: All three things were excellent ideas. The room smelled funky when I got there, but my friend’s room that had been cleaned with the usual products smelled like disgusting air freshener *and* funk. And I had an asthma attack as soon as I walked into it, whereas walking into my room was just unpleasant, not dangerous. The HEPA filter took most of the funk out of the room within a couple of hours. Bringing my own bedding was definitely a good idea, as when I sat down on a bed with the hotel’s sheets, everywhere my skin touched them got itchy within minutes.
Problem: American gasoline contains up to 10% ethanol from corn. I react to it if there is a lot of it in the air, and with a pretty weird reaction. My lips burn and my tongue swells just enough that I bite the edges of it if I’m not careful, then I get really sleepy. Like to the point where I will nod off for half a second at a time every few seconds. Being around one to five running cars is okay, but more than that and I’m hosed. Found out the hard way that airplane fuel causes me similar issues.
Solution: I bought carbon filter honeycomb mask from I Can Breathe .
Analysis: I may keep looking for masks. That one was effective and pretty comfortable, but I felt like maybe it didn’t make the best seal against my face and some tainted air got in here and there. Also no, it is not that fashionable. I won’t lie: I did stand there and just deal with the tongue swelling on several occasions because I was too embarrassed to put the mask on and be seen by other fest-goers walking around that way. But after I had a pretty bad reaction to drinking some tapw ater (water addressed in next section), I realized that I could NOT keep exposing myself as exposures add up and lead to a reaction. So I sucked it up and used the mask. I am considering sewing some custom covers for it to make it cuter. Not sure I will bother, though, because who are you really fooling? There is just no way to make that thing NOT embarrassing. Better embarrassed than dead.
Other peoples’ body products, food, and beverages.
Problem: I end up somewhat sick anytime I go to a crowded place due to shampoos, conditioners, laundry detergent, fabric softeners, and perfumes that people use that contain corn-based chemicals, as well as the smell of the corny food they are eating. Airports and concerts are no different, and at concerts you have to actually watch for beverages being knocked out of peoples’ hands or even thrown on the audience. I’ve been bathed in flying beer more than once.
Solution: Generally a prophylactic antihistamine does the trick, but I also generally only get this kind of exposure for 1-2 hours at a time, not all day like at a music festival. My only tactic really was to stay loaded on Benadryl during all air travel, and for the duration of the festival try to keep my histamine load as low as possible by minimizing any exposures that could possibly be prevented.
Analysis: Being in public places with this allergy is like navigating a minefield. I’d be in a crowd for a show and notice a girl with an open can of soda right next to me getting shoved around, then move away from her only to see some guy getting ready to fling his corny beer on the audience just for fun. Then I’d move away from him and bump into the one guy in the audience that hadn’t sweated his corny cologne or deodorant off yet. But as long as I stayed relatively aware I was able to enjoy myself and only spend a small amount of time avoiding allergen landmines.
For the flight, there really was no way to avoid, so I just popped Benadryl as soon as I was through security.(I didn’t want to take it before security in case there was a delay- it makes me very sleepy.) I also wore my mask through about half of the flights. I was super self-conscious about it at first, but on the flight where the guy got on with the entire bag of Popeye’s (cornstarch/cornmeal in the breading), I had no choice. It was that or use the epi-pen/go to the hospital. Fortunately the mask + Benadryl worked. The lady sitting next to me was probably terrified that I had some kind of contagious disease, but she didn’t say anything.
Problem: Corn-derived citric acid is added to city water as a buffer to change the PH and other corn-derived chemicals are used as carriers for fluoride. Most corn allergics react to chloramines in water but I’m not totally sure why. Bottled waters are bottled in corn-based PET plastic, and have filtration processes that involve corn fibers or corn-derived chemicals, then have minerals added back into them in corn-based carriers. But most corn allergics can tolerate at least specific brands of bottled water, and use specific water filters to get corny chemicals out of the water.
For unknown reasons that probably have nothing to do with corn, I react to literally all bottled, filtered, and tap waters I have tried, even the ones safe for other corn allergy people. My reactions to water range in severity but all involve tongue and throat swelling. Even a “little bit” of throat swelling is not generally a good plan, especially when it’s caused by something as necessary as water. The only thing I can seem to drink without reaction for some reason is tap water from the specific water district of Seattle that I live in. Not from other water districts, just mine. This coming year I intend to get to the bottom of why that is.
Solution: This was a tough one, and on many levels/in many stages. I’ll break it down.
In transit: My travel time from doorstep to hotel was about 12 hours each way. That’s a long time to go without drinking water, and I can’t tolerate any bottled waters that I’ve tried, nor can I tolerate tap water from Seatac. I tried it ahead of time and it was bad, like asthma attack, throat closing bad. So how to bring liquid that was safe for me to drink? Generally you are not allowed to carry large quantities of liquids through airport security. There are loopholes for “medically necessary” liquids, but I failed at planning and wasn’t able to get a doctor’s note about this. Even if I had, they have to test the liquid in some way to make sure it isn’t explosive, and I was concerned about them contaminating the bottles by swabbing them with some corny cotton swab. I will look into this for next time.
What I ended up doing was pretty ingenious and weird: I had just ordered several Boston Round bottles in 1 and 2oz sizes for reasons having nothing to with the trip. So I filled a bunch of them with “safe” water from my tap at home and packaged them into quart ziploc bags, compliant with TSA’s rules. I was able to fit 16 oz of water in 2 bags, so between me and my boyfriend there was 32 oz of water for me to drink over 10-12 hours of traveling. Not ideal given how dehydrated I get when I travel, but enough to survive on.
As a backup, I also froze some water in ziplock bags for ice packs for my food, as frozen liquids are exempt from the liquid rules. Travel tip? If you do that, triple-bag them. They sweat and leak like a mofo. And then I also brought several watery fruits with me like oranges and apples.
While there:I’d actually gotten a Baltimore local (Thank you Matt!!) to go to the water district where the festival would be and get me tap water and mail it to me. He sent me two pints, and I tried one but was really sick at the time and couldn’t really tell whether I was reacting to it or reacting to being sick. So I froze the other pint to try later when I was well and the jar cracked in the freezer, rendering me unable to give it a second trial. Rather than take my chances on being able to drink the water, I actually mailed myself a 7-gallon water container full of safe water from home.
This was a big chance, though. The container is made from HDPE, which could contain corn traces depending on what the ethylene was sourced from. I figured being stored at cooler temperatures it’d probably stay pretty stable even so. So I bought the container, soaked it from 24 hours in a baking soda solution, then soaked for another 12 hours in a dilute vinegar solution, then rinsed thoroughly. This removed any plastic smell.
I filled it with water, capped it tightly and taped them shut very thoroughly. Because most tape adhesives are corny, I actually tied fabric strips around the seams where the caps met the bottle so that the adhesive would never come in contact with the water inside the container. 7 gallons of water was 63 lbs, which cost $70 to mail FedEx Ground from Seattle to Baltimore. Not cheap, but inexpensive compared to the total cost of the trip. I chose Fedex over UPS because UPS is much harder on packages- their conveyor belts involve a lot of very long drops, and FedEx’s not so much.
Now what I did to package and mail it was on good- I wrapped it in bubble wrap and boxed it. What I really needed to have done instead was packed it like you do seafood- wrap it in a large plastic bag, then put in a styrofoam box. Not totally sure what happened to it in transit but when the box arrived at its destination, it had been opened, put in a plastic bag, and repacked for me. But it did arrive intact and full.
Good thing it did, because I hella reacted to the Baltimore tap water. The first couple glasses I tried weren’t too bad but the reaction built up over each exposure, and by day 3 of taking sips from the sinks at the venue, i was reacting massively every time it touched my lips. I ended up having a throat closing reaction after taking a swallow of tap water after night 3 and lost most of the evening to a benadryl coma. No epipen and no ER needed, but it was still pretty scary. After that I just went back to the room to drink water. Which was inconvenient to say the least.
After that, I began reacting mildly even to washing my dishes in the tap water, but didn’t feel I had any other option as I hadn’t packed enough to wash in my safe water. So I just sort of sucked it up and dealt with the tongue burning and avoided going near things that might set me off worse like crowds of people smoking cigarettes or busy streets with car exhaust until the tongue burning faded, to avoid going over the edge into a serious reaction.
This was by far the most difficult aspect of the trip. Having to ration out water and never be sure when you’re going to be able to have access something that is such a basic necessity is, well, unthinkable to someone not in this situation.
The worst part about it was somewhat my own fault: I hadn’t made any arrangements with the festival organizers to carry my own liquids into the event. People who have never been to this specific event may not understand why I was hesitant to do so. The security staff at the fest are, well. I won’t say all of them are awful, but there are definitely some bad eggs. In addition to that, they are dealing with a LOT of people and they have pretty specific directives that they didn’t come up with themselves. When you are standing at the head of a line with literally hundreds of people behind you, and you try to tell a security guard who is hot, tired, and has been being treated like crap all day that you have “special circumstances” and need to be able to bring in your own beverage when it is strictly against policy to bring in ANY kind of liquid, not even a 5-hour-energy shot, well. They aren’t going to be too sympathetic.
So I just sucked it up and ran back to the hotel to drink water. No kidding. I was staying about a city block from the festival so that was easy enough, but not convenient at all and probably something of a health risk if it had been hotter out. Fortunately it was pretty cool this year compared to previous years.
I really think I just can’t make a trip like this again without some sort of portable filtration system. I had ordered a portable water distiller for the trip but I just never did get the thing working right. I called the manufacturer and got some advice but haven’t re-set it up to know if it works. Which is why I will not link to the one I bought.
Fortunately for me the mailed water worked. But again, not gonna do this kind of thing again until I get something actually sustainable figured out. It was really just too cumbersome and nerve-wracking, and what if I’d gotten stuck on a layover in some other city with no safe water? Can you imagine the nightmare of having to choose between dehydration and drinking water that makes your lips and throat swell? Note again that my intense water problems are NOT a corn thing, they are, well. I don’t know what they are. Something else.
Problem: Between my multiple allergies to vegetables, and my hypersensitivity to traces of corn in sprays on grocery store produce, I just couldn’t assume that I’d be able to find safe food in Baltimore. In addition to the possibility that I wouldn’t be able to find anything safe, time on this trip was going to be tight and spending it shopping just seemed like a hassle.
Solution: Packing all my own was the way to go. For this kind of event it really is merely fuel, and everything I had with me is super duper safe, though a bit of a weird combo. The one difficult thing about packing all my own food was that my main source of protein all winter has been eggs, and I was worried about assuming that I could eat any old grocery store eggs on the east coast rather than the few brands I’ve tried carefully and know work for me out here. I’ve been lucky with eggs, more lucky than most corn allergy folks are actually, but getting there and finding out they all use some sort of really awful corny egg wash that I can’t tolerate out there would have been pretty awful. A local person from the corn allergy message board actually went and got me several dozen farm eggs, and met up with me on the first full day of my trip to hang out and give me food! It was so wonderful!
The hotel I booked had a microwave and a fridge in the room, so I had storage and cooking facilities. Not fancy ones, but good enough for shoving calories into my face, which was all I needed.
Problem: The performances themselves can actually be hazardous for me. Fake blood, fog machines, and fuel for pyrotechnics all contain enough corn product to give me a pretty serious problem. And weird crap happens as well- I’ve been in a venue where a real chainsaw (without the chain i assume but who knows) was being used on stage and ended up having severe asthma and tongue swelling as a result of being in a closed room with the gas fumes. There was also a performance at the fest where the lead vocalist was covered in some kind of white chalky dust. No idea what it was, but I kept my distance in case it was corn starch or wheat flour. (I’m also gluten intolerant.)
Solution: I have the mask if I need it, but mostly I just have to stay aware. Outdoor venues are easier as there’s plenty of airflow and I can usually just watch the performance from farther back. However, in an indoor venue, I honestly will sometimes just not be able to stay for the set. Which suck majorly. My friend is on the lookout for corn free fog juice but I don’t think it exists.
Peoples’ Perception of My Ability/Dis-ability
This is a weird one to talk about, and it doesn’t get the problem/solution format. I try to keep this blog mostly informational, but it seems impossible to talk about this trip without talking about the overarching emotional difficulties with having an invisible disability.
The thing is, when you walk and talk just fine, and do not look visibly deformed or maimed, people assume that you are healthy, and that anything and everything you do is by choice, from shopping at the farmers’ market to carrying three 1-liter steel bottles of water on my person for a day trip. I’m not at the market for a “fun outing”, I’m doing my grocery shopping, thanks. I’m not carrying water with me because I’m too snobby/paranoid to drink tap water, I’m doing it because tap water *makes my throat close up*. I’m not asking the grocery store employee about whether the oranges is waxed because I’m obsessed with “organic food,” and need to hear placating responses so that I can feel less neurotic about eating. I’m asking for legitimate safety reasons. And I will KNOW if you’re wrong or lying, actually. Just like when you told me that all your potatoes sprout. They don’t. Some of them are treated, and I reacted. Thanks for just making the answer up instead of saying you don’t know, dude.
When I walked up to security looking like a healthy person, they didn’t know what to do when I was carrying all kinds of weird medications and accessories such as epipens, benadryl, and a carbon filter mask.
The first day that I brought my epi-pen in to the festival, I had no fewer than five people examine it curiously. One guy even started to pop it out of the canister and look at it. This made me extremely nervous. There is a pretty sturdy plastic tab on the auto injector that you have to pretty intentionally remove to inject yourself, but if one were curious they could “accidentally” take it off. At that point they’d be at serious risk of a) accidentally stabbing themselves and b) costing me $125, which is the cash price of an epi-pen. Plus they only come in 2-packs so I’d have to pay $250.
When I explained what it was and what it was for, they then asked what I was allergic to. The first time it happened, I considered whether I wanted to say that I was allergic to corn, but just didn’t feel like having that conversation again, so I just said, “Everything.” That’s more accurate anyway, given all the things that corn is actually in. However after the fourth time that was asked of me within the space of walking 12 feet, I got pretty sick of the question. I wanted to answer that I was allergic to prying questions, but didn’t feel that my humor would be appreciated in that situation.
By day two most of the staff were familiar with what the device was but were put off by the holster I had for it, which intentionally looks like a holster for a weapon. It’s pretty tough looking but alas, that is not what security guards want to see. I wised up pretty fast and started carrying the pen and the holster separate from each other, all the way past the initial bag-checker and through security, and didn’t put it away until I was well past the entrance. I still had a couple people examine it carefully, but it got much easier.
The microwave in my hotel room smelled like maple sausage. I tried to deal with it, but it gave me a headache when it ran and after a couple days, it kind of felt like I was reacting to everything I cooked in it. Of course with all the stray allergens getting in my lips and tongue were just burning constantly so it may not have been the food I was reacting to- I may just have been reacting and happened to be eating food. But I was pretty worried about it nonetheless, and the smell really was an issue.
I tried washing it out with Dr Bronner’s and baking soda and that didn’t work. I then tried running a bowl of baking soda and water in it to steam the smell out, helped but didn’t totally fix it. Then I tried to call the front desk about getting a new one brought up but it was when everyone was showing up for the fest and the conversation I had just confused the front desk guy. He thought I was asking for a new room when all I was asking for was a new microwave.
So I went down in person the next morning and the hotel manager was working. When he saw me walk up, he assumed that I was just another ornery guest who arbitrarily wanted things to be “just so.” He barely made eye contact when I told him what was wrong, and just brushed me off. He didn’t ask for my room number and just said he’d “see what he could do.” I could tell he was uninterested in helping me out because he thought I was just annoyed by the smell, whereas in fact I was having an ALLERGIC REACTION to the smell.
When I came back and clarified that this was not preference, this was a health concern, he then tried to “punish me” for making a big deal by offering to come take the microwave away without first finding out if he had one to replace it. I explained that it wasn’t harming me if I don’t run it, and I literally wouldn’t be able to eat any food during my stay there if I didn’t have a microwave since I can’t eat from restaurants and can’t buy just any food from the grocery stores and had to pack my own food all the way from Seattle.
He blew me off even more. The whole exchange was really upsetting and it was especially upsetting because he began using lots of defusing/placating body language before I was even being confrontational, which caused me to step into the role of confronter when I was really just reacting to how he treated me. I was able to recognize the pattern and step back a bit but the whole thing just really made me feel bad inside. I ended up getting what I wanted by letting him know that if he wasn’t able to help me I’d just find someone in another room to switch microwaves with. I think once he realized that I was serious enough to get my needs taken care of on my own and not just trying to, I don’t know, get attention or something, he realized that he needed to help me out.
The microwave was replaced. I still am pretty mad about that whole exchange, though. His staff were all extremely awesome and accommodating, but he was such a total jerk. Even when he called to let me know he was going to get it taken care of he was just so fake and obsequious. I have worked customer service before and I KNOW when you are being fake-nice versus nice-nice. I’ve had the kill-them-with-kindness voice MANY times in my life and I assure you I recognize it when others have it.
Travel with this level of sensitivity is possible but not easy. You really have to want it. It took no fewer than six people *actively* helping me to make this trip happen. And I don’t mean doing research for me or lending me an ear, I mean going out of their way to actually *do* something for me.
By far the absolute scariest thing was the water situation. I’ve said it several times, but I really can NOT travel again until I get this figured out. This coming year I intend to get on the phone with my water district to find out what they do that is different from the neighboring water districts I can’t drink out of, and to somehow learn everything about water filtration so I can figure out what about the filters I might be reacting to. From there I am going to *attempt* to find or craft some kind of portable solution to my water problem. I don’t know how this is going to pan out given everything else I’m dealing with, but I’m really going to try. Yes, this festival is worth that much to me- I still want to try to go again next year.