Host: Dan Kennedy
Dan: [00:00:01] Welcome to The Moth Podcast. I'm your host, Dan Kennedy. And this week, we have a story from The Moth's Community Program. That's the part of The Moth where we partner with neighborhood organizations and community groups for storytelling workshops. So, we collaborated with Upstream Arts in the Twin Cities, which uses the arts to amplify the voice, and also the choice of individuals with disabilities. And that's where we met today's storyteller, Drew Sieplinga.
Even though Drew told this story for an audience of about 15 or 20 people at the final share of the workshop, you're going to notice that there's no applause at the beginning or the end of Drew's story. And there's a good reason for that. The sound of clapping is too grating for folks who are hypersensitive to sound. So, at this particular workshop, the audience was instructed to rub their hands together, which makes this kind of just gentle, shh type of sound. It's really amazing. Take a listen. Here's Drew, live at The Moth.
[cheers]
Drew: [00:01:09] I love words. For as long as I can remember, since I was a little kid, I have loved word games, and word puzzles, and books, and reading and stories. As I got older and went into high school, my love of words and reading became a fascination and love of language itself. I love that the rules are constantly changing and flowing with our own usage of it. It's almost like a living organism, but one that we have all created together and are constantly creating. But it was also in high school, when my fascination was growing, that my relationship with language became much more complicated.
It was during my very favorite class in high school, when I was 16, etymology, of course, [audience laughter] that I had my first seizure in front of people. I found out later or realized later that I had been having seizures before, but they were always when I was in bed reading, so no one ever saw them, so I never knew that's what they were until I had it in school. And after that, I had more seizures through high school, I had epilepsy officially, and through college. As time went on and I had more and more seizures, I started to notice two things about them.
One was that every time I had one of these big seizures, a tonic-clonic, formerly known as grand mal seizure, they were preceded by these tiny little jerks in my jaw and my neck, and they would make me stutter and forget words and have trouble coming up with words. They would get faster and faster, closer and closer together until they turned into one of these big seizures. And the second thing I noticed, was that those little jerks would get faster and faster when I was reading or writing or doing anything related to words speaking, even telling a story, for example. [audience laughter]
But every time I had been noticing these things, but every time I brought them up to a neurologist and I had three or four by the time I was in my early 20s, they would say, “No, that doesn't exist. That's not a trigger for epilepsy. That doesn't happen.” And they would say, “Those little jerks, we can't see them on the EEG. So, that's not anything related to epilepsy. That's just coincidence and it's stress.”
And I knew it was true, but I also started to feel like I couldn't trust myself and I couldn't trust my own brain. It felt like it was pulling me towards language at the same time as it was pushing me away from language and words. I couldn't believe my own brain, and I was fighting with it all the time, and so I had to trust these experts who told me what was really happening was not language related. I remember that it started to come to a breaking point when it was after college and I was working on a book publisher, [chuckles] an editorial.
And in my job, I read constantly, and I had to proofread and edit and do a lot of stuff with words. I was with words all the time. I started having more and more, not just of the little jerks, but also of seizures. I remember this moment so clearly, I'll never forget it, I was at my desk in my office playing a word game on the computer, [audience laughter] as I did every day. I'm sure, supposed to be working, [audience laughter] but was procrastinating. And the game was called Fowl Words. It's F-O-W-L, because there are six chickens at the top of the screen, and each chicken is dropping eggs, and the eggs each have one letter on them and you have to try to make them into a word by the time they hit the bottom of the screen. It's a little stressful, [audience laughter] but the eggs start going faster and faster and faster.
So, I was playing this game and I was having these little jerks and I would play for a little while and the jerks would get faster and faster and closer and closer together. So, I'd pause it and I'd look away, and I'd look over here and not look at any words for a minute until they stopped happening. And then, I would turn around and I would un-pause it and play again until they came faster and faster and closer and closer and paused again. I did this, I don't know, how many times. All of a sudden, I feel my head jerk back. It's very painful. And everything freezes. I can't see anything, because my eyes go up into my head and I hear this awful loud, guttural noise coming from like a hurt animal.
And in the split second that I realize that animal is me, everything stops. And the next thing I remember, I'm crying and afraid. There's these faces around me that I don't recognize and I don't know where I am. I don't know my own name. I don't know what happened. I found out later that the woman who sat outside of my office had heard that large guttural sound, and come in and found me on the floor. And the eggs were still dropping on the screen. [audience laughter] So, everybody who came in knew that I hadn't been working. [audience laughter] So, that was the beginning of when I started having more and more seizures at work, and they became more frequent.
My boss was wonderful and amazing and supportive, but the reality was that I couldn't work there every day having these seizures. So, I took a disability leave for three months, and came back and thought, I'm never going to have another seizure again at work. That wasn't true. I had more and more seizures again. And finally, realized that even though these doctors didn't believe that this was word related, I had to face reality and realize that I couldn't do this job anymore as much as I loved it and as much as I love being around these books and these words, I couldn't do it anymore.
So, I stopped and I moved to Amsterdam, where my mother lived. It was there that I met a neurologist who was the first neurologist who believed me when I said that these jerks were related and that they were all related to language. I couldn't believe it. She said, “I've never heard of this before, but I believe you and let's do testing to try to figure it out.” And so, we did a video EEG for 12 hours. And for one hour, I would read a Dutch book. Every time I had a little jerk, I would raise my finger. And then, for an hour I would not read anything and do the same thing. But it wouldn't happen when I wasn't reading.
And so, after, when I went back to get the results, I remember sitting across from this doctor, and she said, “Well, I've never heard of this before, but I can see. I can see that you are right. It's related to language, because every time you put your finger up, I saw an epileptic spike. They only happened while you were reading.” I just burst into tears with just relief. I thought I would be so devastated to find out that was really true, because I thought it would separate me from words for the rest of my life and I would never be able to be around them anymore. But it was actual relief just knowing that I could believe my own body, I could trust myself.
And since then, I've become just more and more fascinated with my own brain in the same way that I'm fascinated with language to the point that it's like embarrassing how fascinated I am with my own brain. [audience laughter] I would have pictures of my brain hanging on the wall if I could. [audience laughter] But I realized that instead of keeping me from language, it's actually deepened by knowledge and appreciation for language, because I can see how it interacts so clearly in a different way. I'm actually lucky that my epilepsy is located where language is, because I'm so fascinated by it.
And now, I run a bookstore, so I'm still around words. [audience laughter] But I think the difference, is that I have learned to work with my brain and to trust it and to understand when I need to stop everything and not read for a while or not talk for a while. And so, I'm working with it. I realized that, I used to not trust myself and not trust my own brain, and so I trusted the experts. But now I know that the expert is me. Thank you.
[cheers]
Dan: [00:09:24] That was Drew Sieplinga. Drew still works at the same children's bookstore she mentioned in her story with a very understanding boss and a team of coworkers that includes birds, cats, tarantulas, fish and ferrets. She's passionate about making books and bookstores accessible and inclusive.
We often hear about extraordinary circumstances here at The Moth. But we had so many follow up questions for Drew after listening to that story. So, we called her to discuss life after her diagnosis.
Drew: [00:09:56] So, now, I go to a doctor who is an epilepsy specialist. So, she's an epileptologist. It was actually really exciting, because when I went there for the very first time and I filled out the forms, the paper works, there was a list of things. One of the questions I had to answer was, “Do any of the below things trigger seizures for you?” And one of the things was reading. My heart dropped out of my chest when I saw that because I thought, oh my God, not only will they believe me, but they actually have heard of this before. So, now, I have a doctor who has heard of it and she studied it before and I actually have language and praxis, epilepsy.
I've found out probably since I told the story that it's not only really reading that triggers the seizures, it's also any like higher level thinking, so doing any math equations in my head or problem solving, things like that, as well as reading, writing and speaking. I mean, it was amazing first of all, just to believed, in the first place. But to have a diagnosis that was so specific to me was really helpful, because it gave my doctor a starting place for what kind of medicines to try.
Dan: [00:11:18] With the help of her new doctor, Drew was able to find the right medication. And she says that it's greatly improved her quality of life. Even though reading is still hard for Drew, she's found other ways to work with her disability and her love of language.
Drew: [00:11:33] I do my best to stay away from word games now, [chuckles] even though that's hard because I love word games and I try not to play Scrabble. So, I listen to a lot of audiobooks. It's been a process and I had to really learn to stop myself, because I think I was having more seizures, because I couldn't stop myself from reading. But now that I've discovered a love of audiobooks, that helps a lot.
Dan: [00:11:56] That was Drew Sieplinga. You can learn more about the bookstore Drew works at, aptly named Wild Rumpus, Upstream Arts and The Moths Community Program, all on our website, themoth.org.
That's it for us this week on The Moth Podcast. Until next time, from all of us here at The Moth, have a story-worthy week.