Things I Can’t Quite Explain

Things I Can’t Quite Explain

After nearly two years of blogging, I’ve been able to explain most of the things going on in my head in a way that I hope is accessible to readers. However, there are still some things I find difficult to understand, let alone explain to someone else.

A few of these things have cropped up as my musical-writing team is working on edits. Writing a character with OCD in a fantasy universe has been fun but difficult, especially since there have been a lot of misconceptions to clear up.

One of these things, which I have experienced but don’t fully understand, popped up in the script the other day. As I edited it, I remembered all the moments I leaped into conversations in the middle of other people’s thoughts or sentences, so excited to get the words out that I could barely talk.

I remember having this feeling a lot when I was a child. When I had a thought I wanted to share, no matter how inconsequential it might have seemed to the overall conversation, I felt deeply desperate to share it. It wasn’t an obsession, but it almost felt like a volcano boiling inside of me, ready to explode unless I set it free myself. Over time, I learned to douse this inner fire, although in some circumstances - usually related to my deepest passions - I still feel the need to interject.

I don’t have any particular obsessive thoughts or compulsions about this. It comes on suddenly just like an obsession, but I don’t think anything bad will happen if I don’t say the thing. Instead, it feels like I have the perfect response for the conversation, something that will make me sound smart and desirable as a conversation partner, and in the moment, it is inexplicably urgent.

Another challenge of editing has been the need I feel to correct all spelling and grammar mistakes I see. Once again, it’s not like I think someone I love will get hurt if I don’t edit things correctly, like I thought in my childhood about a variety of daily tasks. But, just like if I know that my dollar bills don’t face the same way in my wallet, the thought occupies my mind, and I unintentionally tune out everything else until I can fix it.

This presented a problem during my senior year of college, where I took a class in the writers who inspired Shakespeare. Many of the class texts were written in Old or Middle English, and I had such a problem with the unusual shapes of letters and spelling of words that I couldn’t understand what I was reading. It was the first time I ever had problems with reading, and no matter how hard I tried to convince myself that it was something I needed to overlook, I couldn’t.

This problem bothers me more, as it seems like a link to the stereotype that all people with OCD have alphabetized bookshelves and arrange everything so neatly that things fit together perfectly. It reminds me of the online compilations of “pictures that will make your OCD happy” that depict objects lined up in a row or matching or somehow being organized. It bothers me that I fit the stereotype in this way, although all the negative sensation I feel from not editing things well is a general sense of malaise. With enough effort, I can ignore it and come back to it at a better time, and at work, I am often praised for finding typos that elude others’ eyes.

This week, as I edited the first complete version of the script, I came across something else that has escaped my understanding for a long time. The character with OCD, the one who I was so excited to see in a fantasy universe, was not supposed to be a loner, and yet everyone who wrote her wrote parts where she was completely alone emotionally. She didn’t just talk over people or have specific things she felt the need to do; she did all of these things alone and isolated herself from everyone, even when it was supposed to be a completely different character who was lonely.

Reading that hit home. It felt all too real. How many times had I “messed up” by showing my obsessions, compulsions, anxieties, and fears to others throughout my life, only to find myself alone? Thankfully, now, I feel like I have a loving and compassionate community of friends, but it’s taken me until my late 20s to feel this way, like many of my friends felt in elementary or middle school.

I have a theory that I was too busy fighting things in my head to be able to make deep friendships, but at the same time, I don’t know for sure if that’s accurate. Is there a component of loneliness to OCD? A component of too much introspection? A component that made me laugh at a Tumblr post showing some of my favorite characters living with mental illness captioned “‘Wow, you’re an old soul’ is a polite way of saying ‘wow, you’re only 12 and you’ve already used up all your serotonin’”?

In the end, I reached out to the musical project leader. I explained that even though I don’t know why certain behaviors happen, they’re not all that matters in the life of a person with OCD. And we went through the script together, line by line, not looking for typos but for ways to really, truly make this character a part of our world.

And when I heard the project leader’s first draft of this character’s song, I cried. It somehow took all these things I didn’t understand and made them feel right, almost as if this character was real and sitting next to me. As if I was speaking to someone else who also couldn’t articulate every nuance of their lived experience, but we matched, and we belong in the worlds we’re in.

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.

Gotcha Day

Gotcha Day

Many people who adopt dogs honor the dog’s “gotcha day,” or the day the dog came home. This week, I experienced a different kind of “gotcha day” - in a perfect world, I would be celebrating a year with my first-ever puppy, Ella. Instead, I recall a time when my OCD trapped me, said “gotcha,” and prevented me from being able to take care of the puppy I loved so much.

Even after a year, I still blame myself for what happened. I know it doesn’t make sense. I know that even when I hear a puppy whining in the park it sends me back into unpleasant memories. I know how much I value my sanity and that I wouldn’t give it up for anything. But at the same time, I still struggle with feelings of inadequacy about what happened.

I often think that someone neurotypical - someone “normal” - could have taken care of a puppy with high anxiety and some physical problems. I picture this “normal” person as calm, rational, able to be the adult in the situation and realize that they have things under control.

Instead, I’m stuck with my memories of not being able to turn my head away from Ella, in case she peed or pooped on the floor. Never mind that she was almost completely potty pad-trained by the time I had to return her to the breeder. Never mind that an accident produced by a 3-pound puppy took a couple of minutes to clean up. None of that seemed to matter when my brain was revving and demanding that I do nothing but watch this tiny puppy in case she had to go to the bathroom.

I know that a lot of the problems with our situation were not caused by me, but they were exacerbated by me. I wasn’t the one throwing tantrums for hours on end, but I was the one crying at the tantrums and probably making them worse. I wasn’t the one demanding 24/7 attention, but I was playing into that need of Ella’s by not being able to turn my head away. I wasn’t the one who didn’t know how to walk or sniff grass or do anything any dog I’ve ever met is able to do, but I was the one who couldn’t make myself eat or sleep or function in any way until I reached a crisis point in only nine days.

I was so desperate to get her out of my house that when I asked the breeder to return her on a Saturday and she said she was only available on Sunday, I begged her to reconsider. And yet, I missed Ella as soon as I put her in the breeder’s arms, the same arms I had taken her from not even two weeks prior. I think of her, not often enough to disrupt my life, but when I hug a Frenchie on the street or see dogs parading around in Halloween costumes, I think of her.

I wonder what her name is. I wonder if someone helped her with her anxiety, and if she’s doing as well as I am. I hope she’s not scarred from the experience, and yet, I hope she remembers me. I have a fantasy I know will never come true, of somehow running into her on the street and recognizing each other and being able to have closure.

One year on, I think the best closure I can get is mental. I need to believe that Ella, no matter what her new owners call her, is doing well, and that I didn’t mess her up or ruin her life. I know for a fact that my life is much improved mentally, socially, and financially, even if it meant giving up the little warm puppy falling asleep on my shoulder and snoring far louder than her tiny lungs should have been able to.

When I told my therapist that Ella’s “gotcha day” was coming up, she asked me how I was feeling. I answered honestly - a weird mix of relief, shame, and sadness. Some weird kind of grief for a life I could have had, if only I was different. But instead of my other fantasies, this one was real for nine days, and I experienced both the good and the bad.

She reminded me of my friend who was recently in a similar situation, returning a dog after 3 days. She asked me what I told him, how I consoled him when he cried into the dog’s fur just like when I cried telling Ella I was going to send her to another home.

And just as I remembered Ella licking my tears - the last photo we have together - I remember what I told my friend. That he gave dog ownership a good, honest try. That it didn’t guarantee failure in the future. That he might be better at it if he was working with someone else instead of trying it alone. That he would find a way to have a dog someday where he and the dog were both healthy, and that was more important than embarrassment or shame.

As I spoke, I understood why my therapist made me recall this conversation - I am much kinder to others than myself, and have a big problem forgiving myself for failing to do something I really want to do because of my mental health. I do know others who have had to return pets, and it doesn’t make them bad people or slaves to their mental illness or any number of unpleasant things I called myself when the feelings were still fresh.

It’s been a strange week. I’m doing my best to be kind to myself, to go out with friends and have fun and remember that these are things I can do because I have a good handle on my mental health. I went to the park earlier today and hugged half a dozen dogs and allowed myself to imagine my future success with dog ownership instead of harping on my failure.

I don’t think I’ll have complete closure with this situation until I am able to have another dog. Until then, I think there’s going to be a small part of me that doesn’t believe I can do it, that doubts my character and strength. But one day, I know that I’ll be dressing up another dog in a Halloween costume, and somewhere out there, Ella is doing the same thing.

We might not be reunited at any point to celebrate Halloween or “gotcha day” together, but in the end, we both got what we needed: a good home for her, and a way to work on issues I’d shoved under the rug since I was a teenager with a good therapist and a more mature outlook.

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.

Like Everyone Else

Like Everyone Else

This past weekend, I had a very unusual experience that I tend to assume is normal for most people - I didn’t eat a single snack I packed for a family celebration, only ate what was provided.

Although this might not sound like a milestone, it’s something that I’ve never accomplished in my 28 years of life. And while I joke around that I eat like an overgrown toddler, the truth is that I’m very sensitive about my lack of “normal” eating habits and often get ashamed when people question me about why I won’t eat certain things that the majority of people do.

After so many years of therapy and medicine, I am proud of the fact that I can go through life “passing” as neurotypical. If I meet someone new, their first impression of me is not likely to be colored by the fact that I live with mental illness, and when I share this information with people I become more comfortable with, they are often surprised because I - for lack of a better phrase - seem to have my shit together.

But if someone’s first impression of me is at a restaurant where I’m not comfortable, things seem completely different. I’m anxious and fidgety. I read the menu over and over, almost as if seeing the words again will magically make them change into something I’m comfortable with. I watch the waiter move around the table taking orders with the same look on my face as if I was expecting to be served as the main course.

And then, I order “weird.” I don’t order something on the menu at all, or I order something like an appetizer that’s already pushing my limits but still get the same stares as if I haven’t ordered anything at all. I end up feeling like no matter how hard I try to blend in, I am conspicuous in my eating habits, and no amount of praying or hoping or discouraging can keep some people from interrogating me about why I eat the way I do and humiliating me in front of groups of people.

Even though my immediate family has long been accustomed to my eating habits being strange thanks to a lingering remnant of OCD that I don’t seem able to master no matter how hard I try, my extended family is not nearly so understanding. And although they don’t have to be, I still end up with a sinking feeling in my stomach when it comes to extended family events where I usually have to bring my own food and sneak away until I find an inconspicuous place to hide and eat. It’s not conducive to bonding with my family, as my thoughts and often my actual body are in different places from everyone - but it’s something I’ve learned to accept as inevitable.

As such, I was unprepared for a bar mitzvah I attended this past weekend to not only have food I would eat, but a variety of it. I didn’t have to be hungry at any point in the weekend, nor did I have to scavenge for snacks instead of sitting with everyone and enjoying the event to its fullest. After all, a 3-hour dinner doesn’t feel nearly as interminable when I am eating food like everyone else instead of dodging questions about pickiness and allergies.

It might seem like a small thing, but being able to eat what everyone else was eating - and eat together with them - helped me enjoy this event so much more than many others in the past. I was able to get out of my head and be fully present and participatory, which led to some great conversations with  my aunts, uncles, and cousins. It was so much more enjoyable than I’d anticipated, all for this one simple reason that probably wasn’t even a consideration in terms of planning the event itself.

All this to say, feeling included is a huge part of feeling welcome in a particular space. It was a blessing for me to feel like part of something I don’t usually get to participate in and set aside my feelings of inadequacy for a carefree, fun time. If there’s ever a way that you can consider someone like me in your event planning, even if it seems like something small, it might mean the world to that person.

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.

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.