The Dark Side of Adventure

How I Lost My Ability to “Pass” and What Happens When People Make Assumptions

Five years ago, when I published my first article on The Mighty (featuring my Splat system for communicating about chronic physical and mental health conditions), a woman in South Africa named Simona found my website and social media and reached out. We connected, and our casual correspondence evolved into daily emails and messages about our chronic illnesses, our novels, our humans, and our favorite critter videos.

During this time, Simona and her husband moved to the Costa Blanca region of Spain, and last fall, I finally bought a plane ticket to visit her for her birthday at the beginning of this month. We call each other “soul twins” and we had such an amazing time! Check it out on my Instagram, @superpowerment … and see the pretty side of things.

Because this article is about the ugly side of things.

The commute there was a brutal one, probably by anyone’s standard. Early out of bed for the drive to the airport, then three flights, one being a red-eye, then a 2+-hour shuttle ride to my hotel, along famously twisty inclines (professional cyclists come here to train), where they finally dropped me at the bottom of a long steep hill I had to climb with my luggage. By the time I found my hotel and climbed the four flights of stairs (I wasn’t figuring out the elevator button; thanks, brain fog) and landed in my room, I’d been up for 25 hours.

Is this making you feel tired yet? Sympathetically sore perhaps?

Now let’s add my chronic conditions. I have fibromyalgia and chronic fatigue syndrome, which have a multitude of symptoms. Affecting me most on that initial commute were the dizziness and inability to control my body temperature. So, the world saw me as flushed, sweaty, and wobbly, might have heard me slurring my speech or struggling to put together a sentence, or just thought I was “out of it.” I was certainly self-conscious about it all.

Let’s add my favorite now (*sarcasm*): osteoarthritis with degenerative disc disease and one significantly herniated disc at the L4/L5 vertebrae, which I’ve named Larry. This lends what’s called a “sitting disability,” where I literally can’t sit — without substantial pain. In traveling, I’m constantly trying to just walk around when I can, and sitting when the fatigue and dizziness become too much to bear, and then walking again when the sitting is too much to bear. By the third flight, the pain was excruciating, and the shuttle ride was torture. I held tight to the handle above the window to pull my weight off the seat every time I saw a bump coming up (lots of speed humps) so I didn’t scream out at the rage in my tailbone and Larry. Despite my slow caution, I did scream when I stepped out of the shuttle. It was quite awkward for the shuttle driver and therefore me as well. I just said, “arthritis,” but I don’t know if he understood, or believed me. Since I look so young and able.

Finally, I can’t neglect the irritable bowel syndrome (IBS), which meant this whole time I had to eat in just small portions, cautiously, with panic that anything might set it off … and I wouldn’t be able to reach a restroom. I was so hungry the whole time and couldn’t have any coffee.

For my stay in Spain, I had flexibility, so I booked a whole 12 nights to I could have plenty of time to visit my friend yet still have plenty of down time and some days off, considering we both have unpredictable illnesses that include chronic fatigue. Unfortunately, by the 11th night, I had a fully raging fibromyalgia flare. Even with all the rest, I still was away from home, I still was eating and drinking like a tourist. I think having a refrigerator in my room would have made some difference, but in the end, I was on a two-week vacation, and as lovely as it sounds, and as lovely as it was, it kicked my butt, majorly.

I’ve traveled abroad 17 times and this trip home was the worst ever.

The dizziness of my flare was so bad by my final day, I could hardly eat. And whatever adrenaline or whatnot my body was doing to get by with it, plus the usual pre-flight anxiety about missing an alarm, etc., I slept fewer than two hours my final night.

The good news was I only had two pieces of my trip that day: The shuttle to the airport, and the flight to Zürich, Switzerland, where I had an overnight layover.

I had an ever-so-small breakfast due to IBS fears and took that 2+-hour twisty shuttle ride that this time was horror because of my nausea. The flight was OK but it was delayed, the kind leaving us sitting on the tarmac for an extra hour. Ouch.

Then I arrived in Zürich, figured out the train station, caught a ride to the Haubtbahnhof, and hiked my luggage through the marvelously cold Zürich twilight and landed in my adorable room that I’d picked out for my overnight layover.

My initial plan was to explore Zürich. See some landmarks. Try some local food. Maybe check out some shops and find that Irish pub I read about. But by the time I got there (and with less time due to that delay), the plan changed to doing a little circle through my neighborhood (the Altstadt) and grab a couple slices of pizza to take back to my room.

All I wanted in the whole world, all day, was to just lie down. I had a brief lie down before I went back out, during which I had a very painful cramp thing in my foot, which caused it to curl up and I couldn’t move it (is that a charley horse?). When I got back with my pizza and flopped on the bed to inhale it within the luxurious proximity of my ensuite toilet, that foot cramp thing tried again, and everything was hurting so much more, and that’s when I realized, with despair, that I was on the world’s worst ancient spring mattress. Think cheap motels, where you can see the bed’s concavity from the door as you walk in to your doom.

Again, fewer than two hours’ sleep, as I tried every position and location imaginable on the single bed. I even tried sleeping on the duvet folded on the cold tile floor, with my clothes as a blanket.

That was the setup for my worst travel day ever. There was a wrong train, which I still can’t understand how I went wrong as I checked back the photos I took, including the timetable, the platform, the clock, and confirmed I was at the right place at the right time. I’d figured out my mistake quickly enough after I’d made it, but still I was disappointed in myself, discouraged, extra frazzled from the rush to get on more trains, and anxious about being a half hour later to the airport than I’d planned. By the time I got there and was struggling to find the right check-in counter, which was hidden in the back and not near either of the two different places the two different people I’d asked for help told me to go, I was disgustingly sweaty, majorly dizzy and brain foggy, and noticed for the first time in my life that even my arms were flushed bright red!

I wanted to cry. But I couldn’t. I had to find my way home.

I did make it to my gate in plenty of time. I got my bottle of water and applied my menthol pain patch and my heat wrap over top of it. I ate like a bird on the plane. See, I’ll eat the entrée and save the sides for later, so I don’t overwhelm Harve (that’s the name of my irritable digestive system) by eating it all at once. The flight attendants didn’t care for that. They kept wanting to take my tray and I kept having to tell them no.

By the time I got to Newark, United States of America, I decided I would deal with my avoidance of going No. 2 in a public restroom and I treated myself to a cheeseburger. Which I still didn’t even finish because I wasn’t brave enough. I did have plenty of time. I had close to three hours. Harve was a dream.

Until it was time to board.

I’ll spare you the details. I’ll just tell you, that after about an hour in Newark, I noticed my dizziness was getting to a scary level that I’d never felt before. I was terrified I was actually going to pass out. The floor seemed to be steadily swaying, an infinite earthquake. I did my usual walk, sit, walk, sit, walk, sit. And then when it was finally time to board…

It was the first time in my life I had to tell the gate agent I needed to use the bathroom. The rest of the story includes things like … panic. Fear I was going to pass out on the toilet. And honest to God I think they actually held the plane for me.

I boarded as they finished announcements. Everyone could see flushed, soggy, stumbly, bewildered me — the hold-up — stagger on. This was my flight home, so I may have known some of them. I’ll never know unless they tell me, because I made eye contact with no one.

I’ll wrap up by saying that I even had to make an emergency stop at a dirty gas station seven minutes from my house. It was that bad.

There’s one interesting recurring detail I left out of this story so far.

I share all this with you — this maudlin and embarrassing tale — to do what I do, which is to educate and spread awareness. I often tend to make things look easy, as they look in my tourist photos, but understand it’s not. Not for me, and not for many folks.

A particularly unique thing that happened on this trip is for once, I actually looked sick.

Those of us with invisible disabilities often have the ability to “pass” as an able-bodied person, and we often choose to do so. And there’s a reason for that.

People looked at me differently. People treated me differently. And not “better” different. Oh no. The best of them were the ones who kindly bothered to just say, “Are you OK?” as a couple strangers indeed did do, and then I just felt self-conscious about my wretched appearance or reluctant to ever again leave the chairs and stretch out on a floor.

And I was pulled aside three times for “random” screenings. One was a COVID test they asked me to stop for as I was eager to get to passport control and be officially in America again. Twice, my luggage was searched. And yeah, one of those times was in Zürich, when I was stressed and frazzled and wasn’t wearing my watch and wasn’t allowed to touch my phone and had no idea how much longer this was delaying me. They tested for drug residue. And I just stood there, dizzy, exhausted, panicky, and my already-immense humiliation further amplified by a stranger, yet again, publicly pawing through my underwear.

RELATED ARTICLES

• What “Passing” Means to a Disabled Person
• Give it a name.