On The Other Side

On The Other Side

I’ve had panic attacks before, but I’ve never been on the receiving end of one.

Even though it has - thankfully - been years since I experienced one myself, I knew what they sound like. Breathlessness, revving thoughts and words, inability to control anything, spiraling, down and down and down until it seems like nothing will ever be okay again.

I received a phone call from a close friend of mine who was in the middle of a panic attack this week. She’d been unexpectedly laid off, and the pressure of losing her job combined with other things had her breathing so fast and sobbing so hard that I couldn’t understand what she was trying to say to me. I couldn’t even tell what had happened until she texted me, and we had to text and be on the phone at the same time so that I could understand her words.

Until I heard her voice, I had almost forgotten what a panic attack sounded like, but it all came back to me in a rush. I had a lot of them in my junior year of college, and the one my friend was enduring seemed to be much the same as mine. She found herself unable to eat or drink, with a ton of restless energy, her thoughts spiraling out of control until they hit the “all or nothing” category.

I did cognitive behavioral therapy (CBT) for this specific behavior, and it took me a long time to get past these kinds of thoughts. They’re particularly insidious - basically, it’s the kind of thought that makes you see the world in black and white. In other words, someone’s life is either perfect or so horrible that it couldn’t get worse; someone is either employed at the perfect job or completely unemployable; someone has a million people to confide in or is completely alone.

My friend and I had the same kind of thought when we were in this position: everything in life is horrible and can never get better. “I hate my life and everything in it,” she kept saying.

When faced with my own negative thought from years ago coming at me from a different source, I had no idea what to do. I tried to think back to my year in CBT, and eventually came up with something - I could help her disprove the idea that everything is awful by reminding her that some things aren’t. I couldn’t think of anything right away, since she was spiraling into negative thoughts about almost everything in her life at that point, but I did think of one thing - her cat.

I told her that her cat isn’t terrible. In fact, her cat has many adorable outfits, and she loves sending me pictures of her cat. It wasn’t genius, but it did break the thought cycle for at least a moment, until it got started again.

I’ve never understood the “common knowledge” that panic attacks are “supposed” to only last a few minutes. I have never had one shorter than an hour (complete with all the symptoms), and for my friend, it lasted most of the day - just like when I was at my worst.

When it’s that drawn out, the best thing for the person is to not feel alone. I had no intention of leaving her alone at any point throughout the day, so even though I am allergic to cats, I told her that my phone is open and she can text me and call me and do whatever else she needs since I couldn’t physically be there.

I ended up reading her resume, helping her find jobs to apply to, and listening to her for hours as she processed everything that happened and tried to find a way forward. I sat on the phone with her as she moved from hyperventilation to tears and back again, and kept checking on her in the following days to make sure I had done all I could. I tried to offer her all the kindness I received from my best friend when I was going through near-constant panic attacks, and although I can’t say I fixed any of her problems, I like to think I’ve helped in another way.

It was hard for me to try to both be close to my friend as well as distance myself from particularly caustic memories along the way. I kept reminding myself that it’s her, not me, currently struggling. That I’m okay. That I can see, smell, hear, touch, and taste things that remind me of the present (something called “grounding” that my new therapist has taught me). And I relayed this experience to my therapist to let her know what it felt like to observe a panic attack from the other side.

For anyone whose loved ones experience panic attacks, please consider being that shoulder to lean on, the person who helps bring them out from the darkness where it’s impossible to see or feel that anything can get better. It will mean more than you ever know, and although it’s overwhelming on both sides, you have the potential to truly help someone find their way back to feeling okay again.

Ellie, a writer in the Chicago area, was diagnosed with OCD at age 3. She hopes to educate others about her condition and end the stigma against mental illness.

Representation

Representation

Ever since I was a kid, I’ve always loved writing stories based on cards.

Greeting cards, trading cards, any sort of card with a picture will attract my attention, and I will start to imagine the lives of the people in the art immediately. Some of my most beloved old stories come from this method of idea generation, so as soon as I was asked to create 20 character ideas for the musical I’m working on with my friends, I knew exactly where to go.

I decided, since I’m experiencing a resurgence in my interest in Magic: The Gathering, to go through my cards and pick 20 that I’d like to write about. I did that pretty quickly, but since this is a mental health musical, I wanted to try to pick a character who I could truly share my experiences with.

Trauma was easy, and it was also easy to find comedy in the pictures. But I couldn’t find something specific with OCD, and as the deadline for my 20 characters neared, I started to wonder if I was going to be able to muster anything at all.

Then, I went to a pre-release for a new set of Magic: The Gathering cards coming out this upcoming Friday. At these events, players see the new cards for the first time and get a chance to play with them. I didn’t look up any spoilers, so when I got there, I had no idea that the set revolved around werewolves, vampires, zombies, and other fantastical creatures, as well as fantasy elements like blessings and curses. The idea of curses intrigued me, as I saw my mental illness as a curse when I was a kid. I had the idea floating around in my head, but I was completely unprepared for one card that came my way:

It depicts a determined-looking person sitting on the ground, resting a hammer on their knee. They are sitting on a torn-up floor surrounded by loose, jagged planks. There is a lantern haphazardly leaning nearby, as if it’s about to set the whole thing on fire, precarious, dangerous, but still not quite there yet.

The name of the card: “Curse of Obsession.”

I was already intrigued when I saw the name, but when I saw that the card’s flavor text (a mini-story written by the game developers) referred to seeking something with such determination that this person had bloodied their hands, I knew what I was looking at: the first fantasy representation of OCD I’ve ever seen.

Sure, this might seem thin on the surface, but as someone who has washed my hands until they chapped and bled, who has sought answers to questions by doing the same useless behaviors a hundred times over, it made sense to me. I felt represented.

When I told my mom, I wasn’t anticipating her to think I would be offended by seeing something like this in the media. After all, it’s depicting obsession as a curse, even though I’ve seen it like this in the past, especially when I liked to think of myself as someone out of a fairy tale who had to overcome a problem from magical means when I thought brains were boring.

But to me, it all had to do with intention. When I get offended by things like “Obsessive Cat/Christmas/Cooking Disorder,” it is because it uses the acronym without showing any nuance. It doesn’t start a conversation or involve any thought. It’s just like a throwaway joke that makes me feel like the butt of the joke.

I feel the same way when I see portrayals of characters with OCD who display stereotypical behavior as the only things they do. Mental illness is only a part of someone, not the entirety of who they are, and when I see a character on TV or in a movie who is only there to feed into stereotypes as common relief, I feel hurt. I get a similar feeling from images that show a person with crazed eyes, or depicted as inhuman in some way.

The major thing that differentiates this card for me is the intention. The mechanics of the card mean that the person playing with it has to play in a particular way that differentiates from the usual rules of the game. Instead of the usual rules of drawing one card at the beginning of their turn, the player draws two cards, then they have to use only those two cards during their turn, since they have to discard the cards at the end of their turn.

It seems like a disadvantage on the surface, and let’s be honest, it is. But it’s also a different way to play the game, a challenge that requires using both rigidity and creativity. And working with this challenge, you can still play the game just like anyone else, albeit with different strategy. It feels like how I navigate life - doing my best to use disadvantages to my advantage and finding new ways to make things work.

And so, I will be using this card to craft a character. I want to make someone brave, yet tackling self-doubt. Rigid, yet learning how to do new things, or how to do old things in a new way. I don’t know what the backstory will be yet, but when I look at this picture, I see the inspiration for my first character I’m writing to have OCD on purpose. I’ve done it by accident before, but writing OCD intentionally will hopefully help me continue the representation I see in this card and share it with even more people.

While scrolling on Tumblr recently, I saw one of my old favorite posts that has resonated with me ever since I started blogging and sharing my story openly: “The problem with becoming the kind of hero you needed yourself is that it can’t change the fact that nobody came for you.”

In the area of representation, there was no fantasy character who could show me a good life with OCD, a life filled with love and friendship and kindness and overcoming obstacles. As much as I loved - and still love - Gandalf and Aragorn and every other character from the Lord of the Rings series and other favorite books and movies, I didn’t feel like I could ever be like any of them because I had a diagnosis. But one day, maybe this character I’m working on will be that person for another kid hoping to not feel so alone.

Ellie, a writer in the Chicago area, was diagnosed with OCD at age 3. She hopes to educate others about her condition and end the stigma against mental illness.

Mental Health Superheroes: The Musical

Mental Health Superheroes: The Musical

I’ve always enjoyed reading and watching the stories of superheroes and people with extraordinary powers. Whether I’m bingeing “Supergirl” or revisiting some of my old superhero video games, I have always enjoyed the genre.

When I was a kid, I liked to think that a superhero wouldn’t have problems, or that their powers would solve their problems for them. As I got older, I enjoyed the idea of superheroes who had to deal with mental illness as well, whose powers gave them a different toolkit to solve their problems but didn’t actually solve them. They still had to put in the hard work to reach, as my therapist says, their individual version of normal.

As a kid, I didn’t think that a person like me could ever be a hero. I thought that even if I lived in a universe where I had superpowers, I would get in my own way too much to do anything. I would be too busy working on myself to save the world, and in that, I would be the most selfish superhero ever. Not much of a hero, and definitely not someone worthy of an epic tale.

But over the next few months, I’m going to be reconsidering that viewpoint. Now that I have my two negative COVID tests after DragonCon (which was my best con ever), I am embarking on a new project that, when I was asked to be involved, it didn’t even take me a minute to enthusiastically agree.

I am going to be writing a large part of - and managing the editing of - a musical about people with extraordinary powers who live with various mental illnesses, and find a way to work through them together.

Now, I haven’t really talked about this much in here, but I am very self-conscious about my musical ability, or rather, lack thereof. I am slowly learning how to play the ukulele, but I haven’t properly played an instrument since I was a kid (the flute, since I thought it was the most “elfy”), and I don’t know how to read music. I’ve invented little ditties for my stories and characters before now, but after enough people told me I can’t carry a tune in a bucket, I refuse to sing in almost every circumstance.

I’m going to be stepping out of my comfort zone with the music, but into one of my favorite types of stories, with this musical. When I think of powerfully-written neurodivergent characters, I think of my favorite video game of all time, where a love-interest character has to travel through various timelines to erase enough of her abuse and trauma to live. I think of a commander of knights who stands strong against the literal and metaphorical demons of her past, although she eventually falls prey to them. I think of a politically ambitious young girl who manipulates her way to the top, all the while dealing with extreme paranoia and isolation that wreak havoc on her mental health.

The only problem is, all of these characters are presented as villains.

Villains with trauma have become a favorite trope of mine, and a type of character I’ve loved to cosplay ever since I discovered conventions. I have sometimes seen examples of - and written - heroes with traumatic backstories.

But I don’t know what a hero with OCD would look like. In all my reading and playing and watching TV, I’ve never seen one.

It’s clear that there’s no one way to represent the experience, just as there is no one way to approach the challenge of writing a song that will be performed by people who know what they’re doing. I know a few things for sure - I need to represent mental illness as something that affects the character all the time whether or not it’s convenient for the plot, I need to show many facets of this character instead of just one, and I need to find a way for the character to overcome whatever obstacles are in their way without completely erasing mental illness from their life.

But everything else, how the character will move through the story and learn and grow, is entirely new.

This is a writing challenge I’m excited to face, and one that I hope will introduce the audience to the idea that someone with OCD can be a hero not just in their own story, but also in the world beyond. That their superpowers might not nullify what’s going on in their head, but they can be smart, resourceful, and intuitive about how they use their powers to overcome problems both internal and external.

I’m excited for my character, whoever they will become, to join the cast of heroes written by people who are each bringing their own unique brains to the writing room. I think this will be a great opportunity to learn from each other, as well as educate our eventual audience, as we create a new twist on an old story that will hopefully inspire people to consider that they, even without powers, can be heroes too.

Ellie, a writer in the Chicago area, was diagnosed with OCD at age 3. She hopes to educate others about her condition and end the stigma against mental illness.

Everyone Has Something

Everyone Has Something

Whenever someone tries to make me feel better about something going on in my life by saying that “everyone has something,” I picture a comic I first encountered when I was getting my Master’s in education:

There are a variety of animals lined up in front of a human sitting behind a desk. He tells them, “For a fair selection everybody has to take the same exam: Please climb that tree.”

When I saw that comic in school, the professor urged everyone to look at every animal and think about the test from their perspective. Sure, the overall meaning of “equality doesn’t necessarily mean fairness” shines through at a first glance, but it was an interesting thought exercise to really, truly think about what the test meant for each animal.

The monkey, needless to say, is smiling at the thought of an easy test. The bird looks happy too. But the dog looks confused, the seal looks concerned, the penguin looks a little desperate, and the elephant looks flabbergasted. Not to mention the fish, who has no chance of success no matter how hard he tries - and he knows it.

I picture this in every not-so-uncommon occurrence when I confess a fear or worry of mine to someone else, only to be told that “everyone has something.” I know it’s meant to be a comforting phrase, trying to convey understanding, but I don’t see it that way at all.

I think, when people say “everyone has something,” they mean to say that everyone has their own challenges and you shouldn’t feel like you’re the only one in the world who has to deal with them. But when I seek advice and get this as a response, I feel trivialized. 

It sounds, to me, like the person giving this advice is telling me that my problems are small and everyone deals with problems like these every day, and that I should just put on my big girl panties and move on. But as someone whose brain can literally freeze in what my therapist describes as a trauma state from something as simple as unexpectedly having to try a new food or having an everyday experience that reminds me of something in the past, I highly doubt that “everyone” is having the same experience.

When I hear the phrase, I feel like the person is telling me that they don’t see what I’m experiencing as a valid problem. Maybe they’re like the monkey in the cartoon, who can climb the tree in a few seconds and probably climbs trees every day without giving it a second thought. But the problem is, they’re assuming that because “everybody” is the same, I am the monkey too.

The thing is, anyone could be any animal at any time. It might feel, to me, like I’m an elephant who may be able to technically “climb” the tree by standing on my hind legs, but in a way that might potentially be painful or have long-lasting repercussions. I could be the dog, who might be able to jump up branches or use problem-solving to get around the issue but hasn’t figured it out yet. Or I might be the fish, as there are some “easy” things I will never do as they would cause me huge anxiety for no reason at all.

I think about this comic when I remember how my best friend from college, who has social anxiety, got so panicked about turning in a form to add a minor to his college diploma that he never did it, even though he had all the credits and just needed to put a piece of paper on the registrar’s desk.

I think about it when I remember the time I hosted two friends, a mother and daughter, for a large Pokemon Go event. They were very excited to go to the zoo, but when the daughter saw a seagull perched by the entrance of the zoo, she started to melt down and panic, and her mother and I steered her away and back on the bus.

Neither of those events would have scared me at all. But when Nana wanted to have her 90th birthday at a Persian restaurant, my first reaction was raw fear. “It’s just a tiny needle” or “one bite won’t kill you” or “just get over that thing that happened so long ago” might seem like such a simple and easy reaction to have when people see me being afraid for seemingly no reason, but it’s no different than missing out on a college minor or a fun day at the zoo.

Everyone does have their own “things.” But when they’re minimized as “things” or one of my least favorite descriptors, “quirks,” people fail to understand that they are real and often shame-provoking moments that are incredibly hard to deal with, and being told that everyone does those things is both inaccurate (as not “everyone” has the same specific fears, triggers, and behaviors) and trivializing feelings in the moment.

I couldn’t understand why my best friend couldn’t turn in his registration paper even though at the time it seemed so easy to just walk into the building and hand over the paper like I’d done the year before for my second major. In the absence of true understanding, which is nearly impossible to achieve without being in the other person’s head, compassion is the next best bet. Our college has very amazing homemade ice cream, and I suggested we get some cones and talk about something else.

Years later, he told me that he appreciated me not pushing him or telling him that everyone gets anxious. My friend’s mom said a similar thing, saying she was pleasantly surprised that I didn’t try to convince her daughter to ignore the seagull and go into the zoo.

Neither of them needed to hear that other people had anxiety. They needed their own unique behavior and fear to be respected. It didn’t matter how many other people have that exact behavior or fear, or if they’re somehow the only one in the world. What mattered was that, in the moment, someone heard them, recognized that they were having a hard time, and treated them like a person instead of a statistic.

I’m not trying to say that I’m perfect at this. I’m sure there are loads of times I don’t even remember when I inadvertently made something worse for someone by not really listening to what they needed. But as someone who has been on the receiving end of the “everyone has something” remark many times, I try to think of what I need in those moments, and if I can, give it to others.

No one ever really knows if their friend or loved one is the monkey or the penguin or the fish when facing a problem. It might be something you don’t even see as a problem. I never noticed the seagulls flying around the entrance to the zoo or how far the registrar’s desk was inside the office. And when I did, they didn’t bother me. I was the monkey, and climbing those trees was never a challenge. But I - and we all - have been each of the animals in the cartoon at different points in our lives, at different triggers and for different reasons, and we all deserve the same kindness.

Instead of saying “everyone has something,” inspire respect and tolerance, even without understanding, and the person who is currently experiencing their “something” will feel like they are not alone - the original intent of the remark.

Ellie, a writer in the Chicago area, was diagnosed with OCD at age 3. She hopes to educate others about her condition and end the stigma against mental illness.

Unmasking

Unmasking

As I write this blog, I am making my final preparations for DragonCon. One of the last things I’m figuring out is deciding which of my hand-painted face masks I will be wearing at what time. I’ve meticulously prepared my masks that will hopefully protect me from COVID, but there is one kind of mask I can’t wait to shed as soon as I pick up my con badge.

Presenting as neurotypical when being neurodivergent - it’s like pretending to be “normal” - is a common behavior among people living with mental illness. I’ve read a lot about “masking” a variety of diagnoses, and as soon as I saw the term, it made so much sense to me, as it’s something I’ve been doing my entire life.

For me, it started when I was doing behaviors deemed inappropriate by family, therapists, and teachers, and I had to learn how to be socially acceptable. I’ve gotten good enough at it that, sometimes, when the worry becomes too much or I forget myself in a moment of pure joy, people don’t mind if something slips, as it’s such a rare occurrence. I’ve even heard “I would never have guessed” about me having any kind of mental illness before, and took it as a compliment.

I started masking many years ago. When I was a kid, I was extremely loud when I spoke. I was so excited to share every little thing in my life and that excitement bled into the volume of my voice until I was practically shouting every little thing I found interesting. Everything felt so urgent that I felt the need to interrupt others and share my newest idea or discovery. It felt just as urgent as the compulsions I knew I was supposed to be hiding, too.

I have vivid memories of learning how to give the conversation to others, how to tell when people were not interested in my interests, and which topics I should stick to that most people would be interested in. Over the years, I learned to value each little scrap of conversation about something I truly loved, every “what are you playing/reading?” even if I knew I should answer like a “normal” person with only a sentence or two.

Hiding this huge part of myself is incredibly frustrating and difficult. As a kid, I retreated a lot into my head because there, I could think about what I loved for however long I felt the need to, and no one would say it was wrong. One of my favorite coping strategies has always been retreating into stories I’ve grown in my head, ones that I have no desire to type because they’re not objectively anything I’d consider good, but that bring comfort to me after imagining them what feels like a million times.

Even though I’m in my late 20s now, I still get the impulse to monologue about my favorite things in the loudest voice I can muster. Just a couple of weeks ago, I saw the teaser image for Amazon’s new Lord of the Rings TV show coming out in a year and got so excited I started crying and bouncing in my office chair, then promptly wanted to share the photo and my in-depth thoughts about it with every single person I ever met - in caps-lock.

Because of my therapy and training, I stifle these reactions. I know that most of the time, my family and friends don’t care about what I care about, or are willing to put up with it to a certain extent that feels like taking the tiniest nibble off the hugest, most decadent chocolate bar. My positive obsessions run as deep as my negative ones, and as someone who has successfully been able to switch most of my focus from the negative ones to the positive ones, it feels like I have an endless well of passion that always has to have a lid.

Always, except at DragonCon.

There, the lid comes off, even more so than at other conventions I’ve been to. From the moment I get there, I feel like every one of the rules drilled into my head by my therapists and parents and teachers and everyone else to help me fit in flies right out the window, and I fit in perfectly.

I realized this when, fifteen minutes into my first-ever convention in 2015, a stranger recognized my outfit from an obscure video game I discovered right after I got out of the hospital that has one of the most powerful trauma narratives I’ve ever read. Her response to seeing my mostly-duct-tape costume was to squeal (remember your indoor voice, I remembered everyone telling me), run over and hug me (think about the person’s boundaries), rattle off a dozen facts about the character she was dressed as from the same game (the other person might not be interested), and invite me to a photoshoot taking place later that afternoon (they might be trying to escape the conversation).

She’d broken so many rules, and yet, in the picture she asked to take with me, I am laughing and hugging her back just as tight.

That moment, and the days I spent hanging out with her and my new group of friends afterward, cemented a powerful love of cosplay and conventions in my mind. After all, I took my cues from the girl who first found me - when I made my way to the group, I wasn’t shy telling everyone about my favorite scenes from the game and laughing too loud at people’s funny props and asking for dozens of pictures. And I was one of many, instead of feeling like the strange girl who has to keep myself in check at all times.

At DragonCon, my outfits scream, “I’m extremely passionate about this character and the game/fandom they come from to the point that I have spent a lot of time and money to look like this, and continue to wear this insanely hot outfit even though it’s almost 90 degrees in Atlanta right now. PLEASE come up and talk to me about it!!!”

I carry around heavy or bulky props to show off my sense of humor. I am a whirlwind of energy, dancing at the annual Lord of the Rings elf party, rushing from one photoshoot to another, jumping up and down to get an autograph from a favorite celebrity, smiling so hard that my face muscles hurt because I simply can’t stop. I talk too much and too loud and still manage to make lasting friendships. (Case in point - I’m going to be sharing a hotel room with a friend who rushed through a crowded photoshoot to laugh loudly at the toothpaste I was carrying around as a joke, and years later, we are very close friends who still joke about oral hygiene.)

I never had a desire to break rules like doing drugs, drinking underage, or staying out past curfew. But I get such a thrill out of breaking the rules of neurotypicality at DragonCon. I get a rush from not having to censor anything I say or how I say it, and have it work out instead of feeling like my real self is “wrong.”

I’ve gotten picked for trivia games out of a room of hundreds of people by being the loudest volunteer or jumping while raising my hand. I’ve been the first person to rush onto the dance floor at the elf party and never lacked a partner or group to dance with. I’ve shouted the name of a character and run across a crowded hall to embrace a total stranger, and just like at my first con, I’ve made friends who think - like I do - that our extremely strong passions are a good thing.

This year, it’s going to be different. DragonCon is going to be smaller, although still large enough to make me debate whether or not I should go considering the current state of the pandemic. I talked things out with my therapist for a long time, received opinions from friends and family, and ultimately decided that after a year and a half of looking after my physical health first, I was going to prioritize my mental health.

When I thought about not going to DragonCon, I knew I would miss the shopping and the celebrities, the silly traditions like mourning the old Marriott carpet and finding little hidden souvenirs to enjoy and share. But what I would miss the most was the freedom I feel, finding others for whom the weekend represents the same freedom, and sharing in our joy together. After the last year and a half, a time during which I have struggled a lot with the legacy of my germophobia and felt a near-total lack of control over my circumstances, I could at least give myself this.

At DragonCon, no one “puts up with” me. I bother no one, and no one bothers me, as we do so many things that are frowned upon in polite society. I’ve seen people doing all sorts of things they would likely never normally do, and we are united through the depth of our passions and how liberating it feels to express them wholeheartedly.

As I finished arranging my cosplay across my bedroom floor earlier today, I saw a commercial for the DragonCon parade on TV. I felt my face bend into that face-hurtingly huge smile and let out a tiny squeal, remembering to stop it before it would annoy anyone. In just a few days, I thought, I’ll be putting on my multi-layered face masks to protect myself from COVID. But I will also be taking off the mask I hate to wear the most, and letting my genuine self have a few days in the sun.

Ellie, a writer in the Chicago area, was diagnosed with OCD at age 3. She hopes to educate others about her condition and end the stigma against mental illness.