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.

A Deeper Reason

A Deeper Reason

If someone had been able to look through my window for a few hours last week, and they knew my diagnosis, they might have expected what they saw: I was sitting on the floor of my apartment, methodically counting out peanut M&Ms and then rushing to wash my hands and the spot where I was laying them out as soon as I was done.

On the surface, it would have looked like typical OCD behavior: counting, sorting, hand-washing. But this time, instead of doing these things to soothe a compulsion like I used to when I was a kid, I was preparing for my Nana’s upcoming 93rd birthday.

I’ve been talking a lot with my new therapist about control. I am the kind of person who wants to control every situation in my life, and when I can’t, I get increasingly stressed. I wrote about this feeling just last week, when I talked about the helplessness and fear I felt when my dog was sick. Thankfully, he’s taken a turn for the better, but I’ve also been feeling distressed lately about Nana experiencing pain in her neck.

Like me, Nana is on blood thinners, so she can’t do much of anything about any pain that she feels. I know, from personal experience, how much I want to take Advil when the need arises. And when I heard that she was feeling pain and no doctor could do anything about it, I felt the same helplessness I feel when it’s me in the patient’s seat.

I know, rationally, that it would be almost impossible to have nothing wrong with your body at age 93, and that pain is part of the human experience. But that doesn’t change the fact that as a granddaughter, I hate that one of my favorite people in the world has to hurt and modern medicine hasn’t figured out what to do. And if doctors don’t know what to do, I figured there’s no way I could do anything about it, either.

I started to feel the same way I did when my dog was so sick last week: helpless, out of control. But then, when I thought back to what has helped me with one of my biggest obsessions throughout my life, I got an idea.

A few weeks ago, I wrote about the fact that my psychiatrist prescribes me anti-emetics in addition to the mental health medicine I take every day. I only use a few anti-emetic pills in a year, but they are always in my purse, something to remind me that I don’t have to feel extreme panic if I don’t feel well. It has occurred to me that, even though I’m getting real medicine from a real doctor, I could just as easily be taking fake pills if I was convinced that they were real. The placebo effect would stop my anxiety in its tracks.

I also remembered a rather funny conversation with my first hematologist where she said that I needed to restrict my eating leafy green vegetables because of vitamin K, but I had no restrictions on chocolate. At the time, I’d jokingly asked her to write that on a prescription pad.

And so, I went onto Amazon and ordered a dozen empty pill bottles with arthritis-friendly lids, then some labels to write on. Then, it was time for the peanut M&Ms.

Peanut M&Ms are Nana’s favorite candy that could fit into a pill bottle, and there was no way I was going to avoid them because of the cross-contamination with tree nuts written on the packaging. I set aside a space in my apartment that would be “contaminated” until I was done, popped open all the pill bottle lids, and got to work.

I put one M&M in each bottle for each day of that respective month. I used 365 M&Ms in total, making a supply of “perseverance pills” for the entire upcoming year. Even though it’s obvious that I’m not a doctor and these “pills” are made of chocolate and candy, I’m pretty sure they will still have the desired effect of reminding Nana that she is immensely loved.

I find it incredibly frustrating that I can’t help with the physical aspects of her life. I live far away, and just like I’m not a vet who can help my dog, I’m not a doctor who can help Nana. But our bond has always been about so much more than the physical, and relying on each other in tough times keeps us both strong.

Every time I leave home after visiting, Nana reminds me of our “special deal” - “You take care of you, and I take care of me.” On the days when self-care doesn’t feel like a priority, or when stress starts to take over, I think of this and try to take care of myself like she would if she could teleport into my apartment. She does the same, and although there are some things we can’t fix, we do our best to support each other in the ways that we can.

I’m still frustrated that I can’t do anything to make Nana feel physically better. But, thanks to these M&Ms that I counted and arranged and cleaned up after so meticulously, I think I can put a smile on her face every day for the 93rd year of her life - and it’ll all be worth it.

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.

Out of Control

Out Of Control

I woke up to my phone ringing, not my usual alarm, but my special Lord of the Rings ringtone. It usually puts a smile on my face, but when I picked up the phone this time, I knew right away that something was wrong.

It was both of my parents, calling from the car, and I could hear my family dog breathing heavily in the back seat. They were at the vet because he had gotten sick all of a sudden, and the more information I got, the worse it sounded.

He wouldn’t eat, which is one of his favorite things in the world. He threw up. He was panting very heavily. His gums were pale, which a hastily-conducted Google search told me was a dangerous symptom that could lead to many possible things. Add all of that onto the fact that he recently turned 15 years old and is a cancer survivor, and it sounded like a recipe for disaster.

When my parents had to hang up the phone as the vet tech took him inside, I hung up the phone feeling utterly helpless. I could do little more than text my boss to let him know that I needed to have the day off work, and then I collapsed into my big squashy armchair with my Gandalf Build-a-Bear.

My mom sounded wild with anxiety and grief, my dad seemed subdued, and I felt numb. I just stared off into the distance, not sure what to do, and acutely aware that even though I am quite the “control freak” in my everyday life, this is a situation I had absolutely no control over.

My dog was 800 miles away, in the vet’s office. My parents couldn’t even go in with him because of the pandemic, so even though they were nearby, they couldn’t do anything either. Whatever was going to happen was going to happen regardless of what any of us said or did or wished or prayed. Everything was out of control.

Usually, when I feel like that, I panic. But this time, I was just numb, curled up in the chair, only able to concentrate on the soft texture of the teddy bear I was hugging and the slight rock of the chair as it tilted back and forth.

Like many times when things go wrong in my life, I reached out to friends for help, and one of my close friends immediately volunteered to come over. I thought I might be bothering her at first, but she set my fear aside and said she would come over right away. It occurred to me, as I tilted the chair back to an upright position, that I was still in my pajamas.

There was one thing I could control: I could choose what to wear.

I peeled myself out of the chair, shuffled into my room, and picked out a black t-shirt with a white and yellow outline of Pikachu. I didn’t bother changing the earrings I slept in, but I brushed my hair, and when I looked in the mirror, I at least looked a little more like myself.

My friend arrived shortly after, sweeping me up in a big hug the likes of which I haven’t really done with anyone besides my family since the pandemic started. I caught her up on everything that was happening and she told me about some of her previous pets and their health problems, and how she’d learned to deal with what happened to them. As someone who also has a lot of anxiety, her insights were very valuable.

Then, I took a dive into happier memories, like the giant picture on my wall of when I read him the entire first chapter of Harry Potter and the Chamber of Secrets as a bedtime story. I showed off his special bow tie I got him at a convention and three neckties he got from his groomer. I showed my friend the tallit he wore at his bark mitzvah two years ago, and in showing off some of my favorite photos and telling stories, I felt like I had at least a little control over how I was thinking of him in the moment.

My friend ended up staying for several hours. In that time, we processed the news we learned about the ultrasound showing lesions on his liver and the blood test with elevated liver values. Then, the news that his current problem is pancreatitis that came on suddenly, and he needed an IV and several shots. We tried to think through different alternatives, including the painful thought of saying goodbye to my dog over Zoom.

By the time she left to go to the dentist, I felt more like a human again, and I decided to take charge of the little things I could do. I organized some playing cards. I picked up a prescription and bought some ingredients for a salad. I started packing for my upcoming visit home. And I stayed in touch with my family throughout the day, doing my best to get information 

As I write this, he is at home, resting with my mom. She’s trying to get him to eat and drink without much success. He’s still fighting the medicine to not sleep. I have no idea if he’ll be better or worse by the time this blog post goes live in a few days, and I have absolutely no control over the outcome.

In the meantime, I am going to remain as mentally healthy as possible by retaining control over the things I can do. I can focus on the little daily choices in my life, whether that means picking what to wear, what to eat, which assignment at work to tackle first, whether to play a video game or read a book, or which route to take on my daily walk.

Even though the bigger things were - and remain - out of my control, I still have the option of making things easier on myself by controlling what I can, and in doing that, pushing at least some of the anxiety away.

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.