Only A Few Words

Only A Few Words

In these blog posts, I often use between 600 and 2,000 words to describe a moment of lived experience with OCD. Sometimes, it’s not easy to fit the circumstances, reactions, and more into such a small space. But this week, I’ve discovered an even bigger challenge - how to describe the OCD experience in only a few lines of dialogue in a musical.

When I started the musical-writing process with a group of friends a little over a month ago, I had no idea how much we would lose in the editing stage. Because we’re planning a virtual show, the director has said that people won’t want to watch for more than an hour, so much of the dialogue has to go.

Even when I was writing the first draft of this character, I struggled to imagine how a character with OCD would live in a fantasy world. After all, there aren’t any pre-existing examples, and the few examples of characters with OCD in the media are often overexaggerated. Unfortunately, when I took my first look at what some of my fellow script-writers had written, I felt like stereotypes ran rampant.

The things that bothered me the most were that the character with OCD had no interest in conversing with her peers and that she could only focus on completely random things to the exclusion of all else.

I can attest to the fact that this is, sometimes, what a first impression looks like. But at the same time, in a musical designed to focus on the way our neurological differences can help rather than hinder us, I definitely had some bones to pick.

I enjoyed that the character is shown as smart and enjoys fussing with things with her hands, but some of the dialogue reminded me a little too much of Sheldon Cooper from “Big Bang Theory.” Although the musical is a comedy, it’s not intended to poke fun at people’s mental health problems.

Somehow, I and the other writers had to fix this problem in the script with only a few lines. Where could we even begin?

The first thing I think helped a lot is that each major character, including this one, is going to have their own song, a moment in the sun to explain who they are and how they’re growing throughout the story. It’s a crucial point to the plot that no character is defeating their mental illness - instead, everyone is learning how to use their mental illness to their advantage in the final fight against evil.

I love the idea of this character using her intelligence and fixation on tinkering to help the greater quest, but I don’t like the idea of her ignoring everything else to only focus on her passions. I think I’d like her better if she was engaging with the other characters, teaching about her interests and learning about others’ interests, and finding a way to turn her ritual of having to tinker with things in a specific way to her advantage.

While it hurts to see that some of my friends hear “OCD” and think “person who can’t make friends because they’re too busy obsessing,” I am grateful to have this opportunity to educate. I signed up for this project to share and learn, and this is a great way to do so both within my circle of friends as well as with anyone who sees the musical once it’s live on Twitch. I don’t quite know what words I will use to describe this character’s life, but no matter how limited it will be, I will clear away as many of the stereotypes as possible and follow through with my dream of creating representation in the fantasy genre.

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.

Of Barrels and Comfort Zones

Of Barrels and Comfort Zones

As I stood on the first barrel in a row of five in a high-ropes obstacle course this past week, all I could think of was something Dad likes to say to me when I’m afraid of getting hurt in an adventurous activity:

“The people who run this place don’t want you to get hurt. They don’t want the liability, the paperwork, the lawsuits. They don’t want you to get hurt any more than you want to get hurt.”

His words cycled through my head again and again as I shifted my weight on the barrel. The one I stood on was arranged horizontally on some ropes and couldn’t move, but the one that was next up was a vertical one that pitched forward unless you stepped exactly in the middle. The third and fifth barrels were horizontal too, but the fourth was vertical. It seemed like my best bet was to move quickly, not give myself time to sway and slip on the moving ones.

That is, if I could convince my feet to move.

Since this was a work “team bonding” experience, I was surrounded by coworkers. Many of them were on the larger towers or higher up on the one I was on. They were moving quickly, not holding on so tightly, excited about the big zipline over the lake we kayaked over earlier.

I felt very comfortable kayaking. I’ve done it several times with Dad, and it was even easier when I was paddling the boat myself. I made my way around the whole lake, found a bluegill swimming around, and tried my best to calm down before going anywhere near the ropes course.

As someone who is very afraid of heights and prefers my feet to be on the ground where they belong, I was very anxious ever since my team’s manager announced that we were going to a ropes course to bond as a team. I immediately pictured myself as the team freak, unable to do things other people could. That thought has been bothering me lately, that I have limitations even though I do enjoy the strengths my condition also brings me, so I was dreading the day.

The sticking point: we were being heavily encouraged to “step out of your comfort zone,” but my comfort zone was leaving the ground in any way. The little tutorial ropes made me anxious, and just thinking about the tower called “The Skyscraper” made me want to run back to the kayaks and paddle away so fast that no one could find me.

All week, I’d comforted myself by telling myself that I wouldn’t try any of the rope activities. Even just thinking about it was making me immensely uncomfortable, and even though my coworkers couldn’t see that, I was technically pushing myself out of my comfort zone. But when I got there, I decided that I needed to take back a little of the power I felt I’d lost when thinking about things I couldn’t do.

And so, I reminded myself that the park didn’t want lawsuits or injuries for their own sake in addition to mine, and I decided to do one obstacle on the lowest level of the very first tower. The choice was between a teeter-totter where everything moved and the barrels where only two moved, so my choice in that was easy.

Everyone else was far ahead of me, except for a few coworkers who stayed on the ground taking photos. One stood by me, encouraging me as I stood on the first barrel for what felt like forever, swaying ever so slightly back and forth, trying so hard to not look down, thinking about how to make the moving barrels stay still long enough to not freak me out. A few times, I came close to lifting up a foot, not knowing which one I should do, overthinking whether I should use my stronger right foot to get a strong hold on the new barrel or keep my stronger foot on the steadier barrel.

At some point, I realized I could stand there all day. I was already well out of my comfort zone, far from the relaxation of the kayaks on the calm lake. I could have turned around, known that I challenged myself, and only been a little sheepish if anyone saw me climbing down without doing any obstacles at all.

But I needed to prove something to myself. I stood there on that barrel, looking down at the gray rocks below me, knowing that I’d tested the strength of the ropes and the hooks, knowing that there was someone below me to catch me in case those failed too. The park didn’t want me to fail, and I needed to know that there were some ways in which I could challenge myself and succeed. This might sound like a small challenge in the grand scheme of things, but as a kid, I always believed physical challenges like ropes courses indicated bravery in participants, and this week, I needed to feel brave.

And so, I lifted my foot off the horizontal barrel.

My idea for minimizing the movement worked. The vertical barrel tipped forward only a little as I found my footing on the next horizontal one, and then before I could lose my nerve, I rushed across the last two barrels, clinging onto the post on the other end as I found myself on a small platform in a tree.

“You’ve done it once! You can do it again,” my coworker shouted at me from beneath the barrels once I got brave enough to turn around. I looked over to the ladder, setting my sights on getting back on the ground. Focused on the sensation of the plastic-coated wire under my hands, the ladder down that really wasn’t too far away, the employee standing underneath me, the sound of my phone clicking as my coworker took photos, the approaching clouds.

I went back as swiftly as I could, clipped and unclipped myself into the ladder, and breathed my way down, not stopping until my feet were on the ground. And it was good I was able to muster my courage so quickly - as soon as I’d hurriedly shucked my equipment, I noticed several of my coworkers being pulled down on the rappelling lines after a thunderstorm warning made the park close early.

Even though I couldn’t participate in the discussion about being excited to zipline (it would have been almost impossible to get me to ride this zipline), I could feel like I was part of the group by talking about the obstacle I’d done. Even though most people did many more obstacles, I still did enough of the activity to get the feel of it (and a pretty good workout, according to my Fitbit), and I got to avoid that feeling of not being able to do things other people find easy.

I really needed to know, especially after making the difficult choice to postpone my dream of owning a dog, that I could do this thing that other people could do. And it didn’t matter to me, in that moment, that some of my coworkers were on the taller towers or rappelling down the sides instead of clinging to a metal ladder like it was their only chance of survival. It didn’t matter to me that some people were able to have fun instead of panic, or that they were excited about this trip instead of dreading it since the moment it was announced.

All that mattered was the everything that worried me so much in the first place - stepping out of my comfort zone - and that this was something I was, in fact, able to do.

 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.

Saying “So Long” to a Dream

Saying “So Long” to a Dream

Almost a year to the day after I had to return my puppy Ella, I found myself wandering the dog toy aisle in TJ Maxx again. But this time, instead of for myself, I was buying a toy for my friend Louie (name changed for privacy). He - after years of wanting one - had sent me a photo of a gorgeous dog named Star (name also changed) who was going to be moving in with him imminently.

As I walked down the row of toys, the same one I excitedly traversed a year ago, I started to feel immensely jealous. Why could Louie have a dog, and I couldn't? The rational excuse of him getting an older dog who was already trained hardly made me feel any better. He was getting a dog to love, and even though I could pet her and hug her when he let me, she wouldn't be my dog.

I bought Star a toy shaped like a Gatorade bottle. I couldn't bring myself to buy one of the fancy Halloween toys I bought for Ella and then donated when she was gone and I couldn't look at them any longer. I didn't think I could bear to see a new dog playing with the toys I'd bought for her, so I got something entirely new, then took a huge walk to try to clear my head, and waited for when Louie said I could come over.

Three days after Louie brought Star home, he invited me over to meet her. He sounded a little off on the phone, and I even asked him if he was mad at me, to which he said he wasn't. New toy in hand, I descended in the elevator, putting on a happy face. I needed to be happy for Louie - and of course, I wanted Star to like me.

Louie opened the door and, as I tend to do when I know there are cute dogs around, I leaned around him to see the dog. I'd seen pictures of her before, but now I could see her a lot more clearly. She was a mostly brown dog, medium sized, with black patches on her back. She had been bred a couple of times; from what Louie had told me, she had a tough life. Her feet looked like they had white mittens and her ears were too big for her head. All this to say, she was adorable, and I quickly held out a hand for her to sniff and showed her the toy.

It took me a minute to notice that Louie had retreated to an armchair and was staring off into space, his breathing fast, his eyes red and teary and lost.

I knew, even as Star walked over and started sniffing my hand, even as she leaned her face into my mask and started sniffing that too, that Louie was in a very familiar place.

He told me he called me first, not because we were neighbors, but because I was someone who had gone through the same thing - moved into a dog-friendly building, sought the perfect pooch for what felt like forever, got her home - and then had a mental breakdown.

I slid down onto the floor, coaxing Star to stay next to me and explore her new toy while Louie talked. He told me everything - how he was so thrilled to pick her up, how he researched everything and felt so prepared, how his anxiety made him question every tiny little thing and wouldn't let him eat or sleep or think properly.

He told me that Star was the perfect dog. He'd learned from me, he said - he didn't get a puppy and he specifically looked for a dog who would be calm. He told me that Star was 3 years old, house trained, knew her commands, and acted extremely calm. He gave me some of her treats and showed off how she could sit and stay. He told me the problem was all coming from him, not her, and no matter what he tried to convince himself to do, he was 98% to the decision to return her to her foster home.

He asked me about Ella, and I told him everything. How ashamed I was that I could be brought so low by a 3 pound creature who loved me so much. How I could see the light leave my eyes in photographs in only nine days. How I'd worked so hard for so many years to be normal and how much it hurt me that there was something I thought I could do but couldn't, no matter how much I wanted to. That, no matter how much I ran wanted to ignore it, OCD is still a part of my life, even after having fought it for a full quarter century.

I wouldn't wish this on anyone, but I have to say, properly talking about Ella and my experience with her was helpful. After a year of shoving everything under the metaphorical rug, I was finally exposing my shame to the light of day, and it was helping someone.

Star sat next to me as I talked with Louie. Her fur felt so soft. She kept looking up at me with huge brown eyes, just like my family's dog who I miss so much when I'm away from home. She was a lot like him - content to chill on the couch, only getting up to stretch, leaning in when I stroked her chin.

And I couldn't help it - as soon as Louie said he was thinking of returning her, I pictured her in my home instead. She had none of the behaviors that stressed me about Ella, and deep in my heart, I'd been considering trying to find an older, calmer dog and giving it a try. I wasn't looking yet, didn't know if I was ready, but she just kept looking up at me with those eyes.

I stayed with Louie for a long time, listening as he cried to me that he was a coward who could only make it for three days, who couldn't be ready even though it was all he wanted. And eventually, he told me about the foster home she'd been staying in, and asked if he should give them my name.

It was so easy to picture: coming home to a beautiful, happy dog who was content to be alone, crate trained, and had nothing at all for me to worry about. I knew, from my childhood with my family dog, that I obsess a lot about whether the dog needs to go outside; she wouldn't have that problem. She wouldn't bark or bite or do anything wrong. And she just kept looking up at me with those big brown eyes.

I was so unbelievably tempted. I had, late at night, been wondering what it would be like to try again, this time with the help of my therapist. I would have resources I didn't have last time, and I had dropped the emotional desperation I felt during the pandemic because I've recently had my third Pfizer shot.

There was only one problem: even with all of those good things, I'm still me.

I had to be honest with Louie, and I told him: "I wish I could. There's a good chance it would work out well. She has none of the things that stressed me out before. But I can't guarantee my OCD won't come up with anything new."

He nodded, said he wouldn't mention me to the foster home, and I felt my heart break all over again as I pulled Star into a tight hug. She put her chin on my shoulder and just stayed there. Listened as Louie and I cried together and prayed that one day we could both be stronger.

I am writing this post two days later. I just got off the phone with Louie, who sounds like his old self, a completely different person than the one I saw two days ago. He told me that Star has a new home thanks to the foster family, with a yard and another dog and kids to play with. She's going to be happy there, and healthy, and I will be too, on my own. But that doesn't make it any easier.

Nana always tells me, when I cling to her at the end of a trip home, that I shouldn't say "goodbye." I should say "so long," because it's not forever. It's a shorter parting in the longer scheme of life.

This experience has convinced me, more than any of my friends or family with well intentioned opinions, that I have to say "so long" to my dream of owning a dog. My best bet is probably to listen to my mom, who recommended I wait until I'm married and no longer living alone.

It feels closer to "goodbye" than "so long," because I'm nowhere near being in a relationship close enough to the point where I would move in with anyone. I need a lot more therapy to get to that point, and it's impossible to put a timeline on emotional healing. It feels equally impossible to imagine myself with a dog one day, one who I can handle even with my OCD.

It hurts even harder knowing that my family's dog, the one who helped me get over my childhood fear of dogs, is declining in health. It hurts that I have trouble being around him sometimes because many of his health problems are things that directly trigger my OCD. It hurts that, on some visit home likely in the not-super-distant future, I will say "so long" and it will actually be "goodbye."

I don't have a pretty way to wrap this up in a bow and say that the story is over. It's not, and it won't be until the day I am strong enough either on my own or with someone else's help. And until then, I can only imagine that beautiful moment when I will have a pair of dog eyes looking at me and knowing that my home can be a real home.

 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.

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.