When I was an undergrad at the University of Minnesota, I studied abroad for a semester at Glasgow University in Scotland. It was an amazing time. I met a lot of cool people; I was challenged in the best ways. I learned a lot about myself and what I could handle.
Basically, I did all the things an American student is supposed to do while in Europe.
The best part for me, though, was the semester schedule. If you don’t know this, European colleges are extremely different from American colleges, one of them being the overall semester schedule. Sometimes, European universities have a few months of classes, then a month-long spring break followed by two months of study time for final exams.
Glasgow University happened to be such a school.
Needless to say, I was stoked. For my spring break, I planned a three-week backpacking tour of Berlin, Amsterdam, and Galway, Ireland. My friend in Amsterdam–we’ll call her Sierra–also wanted to go to Germany. Because we didn’t have the time to devote to a full expedition of Germany, we chose to meet in Berlin.
Berlin as a city is known for many things: occupation post-World War II, walls, original Banskys, gentrification…and nightclubs.
Now, I have frequented the occasional nightclub prior to my Berlin escapades. For those of you living with epilepsy, a doctor will tell you that you should avoid strobe lights. It’s good advice, too. If you’re photosensitive, strobe lights will cause excessive seizure activity, and strobe lights happen to be a trigger of mine. For this reason, I tend not to go to nightclubs or concerts that often.
Prior to our first night out in Berlin, Sierra and I met this awful human being at our hostel. We shall call this person “Dana.” Dana was significantly older than us at the time. We were both about nineteen or twenty-years-old, and she was in her late twenties. Compared to us, she seemingly had her shit together.
But she was mean. I’m not talking bitter; I’m talking straight-up, no-bars-held mean.
I’ll spare you the Dana stories for several reasons, but let’s leave it at this: Dana wanted what Dana wanted, and Dana wanted an entourage. Sierra and I happened to be the accidental entourage for that trip.
Don’t get me wrong, we made the best of our trip. For obvious reasons, though, I was hesitant to go to a Berlin nightclub. Berlin nightclubs are the “hard mode” of seizure activity tolerance. There are ridiculous strobe lights in a variety of colors, unbearably loud EDM, smoke, wall-to-wall humans…a ton of stimulation that, when taken in excess, will inevitably cause seizures. Believe me when I say that no American nightclub will ever prepare you for a Berlin nightclub.
But, of course, it was “part of the experience.” Or at least, that’s what Dana insisted. I’ll admit, some small part of me wanted to spite her, and I’m not one to miss out on things I’ve haven’t tried before.
So, I agreed.
I told both Sierra and Dana my concerns prior to going out. I said, “I may need to leave early or step outside. I might seize if we’re in there for too long. I can’t drink if I’m going to be exposed to lights.”
In response, Dana said, “I totally get. Don’t worry, we’ll leave together.”
After a brief incident in which I forgot my passport (a story for another time), we managed to get into this club. I feel out the situation; apart from a tall, intimidating woman sitting on a grand, dungeon-esque throne right at the entrance, the lights weren’t that bad. A pink, almost purplish color illuminated the walls, but things were rather calm. We turned the corner from the entrance and walked into what I had assumed was the main room.
And that’s when things started to get interesting.
There were laser-type strobes flashing everywhere in a variety of colors. All the people of Berlin, young and old, were dancing their little hearts out together. Despite the stimulation, I had come to the conclusion that this was doable. And so, we danced.
About an hour in, Dana wanted to go downstairs. “It’s so much cooler down there. Can we at least try it?”
“Wait, there’s a downstairs?” I screamed over the music. “Is it better or worse than this?”
“It’s sooo much better,” Dana insisted. My friend Sierra was along for the ride at this point, so she looked at me expectantly.
Fun fact: when someone without a seizure disorder tells you that the dungeon of a Berlin nightclub is “sooo much better,” it’s actually code for “you will die if you stay down here longer than ten seconds.”
And, rightfully, I was concerned about it. “I don’t think that’s a good idea.”
“Oh, come on,” Dana insisted, “Let’s just try it. If you hate it, we can go back upstairs.”
What I didn’t correct Dana on in that moment is that my hesitance wasn’t about preference. I didn’t love or hate the existence of the nightclub dungeon. My concern was that there were real life-or-death medical consequences to my actions. If I went down there, there was a possible chance that I wouldn’t come back up.
But again, I was game for trying. “Okay, let’s go downstairs.”
To this day, I haven’t seen anything quite like that basement in the Berlin nightclub. I couldn’t actually see the dance floor because it was only lighted by the rhythm of the strobe light. I couldn’t keep my eyes open long enough. I was coughing from the smoke. It was downright awful, and I knew I couldn’t handle it.
We made our way through the coked out bodies of Berlin’s nightlife into a safe hiding space near the downstairs bar. Dana left Sierra and myself to go dance. I insisted to Sierra that she could go dancing as well, and that I would be fine on my own.
“Don’t you want to dance?” Sierra asked me.
“Of course,” I said, “but I can’t. I’ll seize if I go out there.”
Despite her reluctance to stand up to Dana, Sierra was a decent person. She understood. She made the choice to stay with me, and we drank and talked near the bar.
Eventually, though, the bar didn’t provide enough protection from the lights. My eyes began to sting. The sides of my skull felt thick and heavy.
Those who have experienced severe photosensitivity can relate. It was like real life was taking a series pictures with the flash on. I could only see things in screenshots, and then surrounding that was a blinding white light.
I had to leave.
At some point, Dana had found us again. When I told them that I needed to leave, Dana did what Danas often do. She rolled her eyes and said, “Can’t we at least try a little longer?”
After some more eye-rolling from Dana, we finally managed to get out of the basement. Dana tried to get us to stay for a little bit longer, but I told them that, regardless of what they were going to do, I was going back to the hostel.
Now, let us fast forward to the next day to conclude our tale. Unsurprisingly, I had an absence seizure at the top of a staircase at a Starbucks the next morning. Sierra helped me through it, and I managed to move on with the day.
Later that night, Dana insisted that we go to another exclusive club. For those you unfamiliar with the concept, the “exclusive” European nightclubs are the ones that average Americans spend hours waiting in line for only to be rejected at the door. You pay for a cab because it is too late to the take train in order to spend your time in a line. In the cold. For two hours.
“I’m not coming,” I said.
Sierra was disappointed but understood. Dana, however, didn’t understand. “C’mon, are you sure? It’ll be fun.”
See, at this point, Dana was doing what Danas of the world do best, which is performing niceness. She didn’t actually want me there. She’d probably trash-talked about me with her friends earlier that day, and she probably talked about me behind my back with Sierra later that night.
Despite the overwhelming urge to spite her, I was adamant. “No. I don’t want to go.”
Dana scoffed, and then Sierra and Dana left for this club, and I had a nice night recuperating in the hostel. I had some cocoa, went to bed early. It was lovely.
The next day, Dana informed me that they didn’t get into the club, but was shocked to her core that they weren’t let in. She believed that, because she’s just so pretty, it didn’t make sense that they wouldn’t let the beautiful people in. They were letting the alternative people in the club instead of her.
She then blamed me for not coming with them because they would’ve let me in. Because, you know, I’m a human dumpster fire.
My dumpster fire face is not the point of this story. The point is that I did something that night that I hadn’t really done before. I said “no” to something because of my health.
For those of us with invisible disabilities, there is a constant pressure to appear “well.” To ignore the pain inside of you and perform your health for the comfort of others. I often feel like I need to overcompensate for my medical condition. People with invisible disabilities do an excellent job of pretending that we’re well, when in reality, we’re suffering. And society expects us to hide this pain, so we adapt.
That night, I chose not to hide. I didn’t feel well, and I chose to take care of myself. The problematic part of this moment was that Dana wanted to correct me. Dana read my act of self-care as a preference, as something I was choosing rather than something I had to do. She disregarded the severity of my situation and made it seem like I was afraid to enjoy my life.
Being afraid is not the same thing as being sick. I would have loved to go out every single night, but I needed to make some choices. Depending on your age and peer group, you might be in this situation now. You’ll have your Danas who keep pushing the limits of your health and safety in order for them to have a good time. And you may be in a place in your life when you believe the Danas because you don’t want to seem weak. You may be at that point in life when you want to be normal so badly that you’re willing to kill yourself over it.
If this describes you, let me tell you something that you need to hear: it is okay to be sick. It is okay not to feel well all of the time. You can still have fun and enjoy yourself. You can still live a great life, a life full of promise and potential, and still take a night off every now and then. You are under no obligation to make able-bodied people feel better. Let them feel discomfort while you take care of what’s important: yourself.