A First Time For Everything

Most people, when they hear that I have OCD, assume that I am someone who organizes compulsively or that my apartment is as clean as an operating room. These people tend to be surprised when they hear that I’m a piler, my bookshelves are far from alphabetized, and I only remember which chores I need to do by looking at a chores app I put on my phone.

It was, therefore, very surprising to me when, on a recent trip to Florida, I first felt the need to compulsively clean.

I was visiting a friend, Nina (name changed for privacy), who I hadn’t seen since DragonCon. After five months without seeing each other - and especially since I’d hardly seen anyone since my beloved family dog passed away - I was thrilled to see a friend who spent so much time and effort to help me feel comfortable at DragonCon.

I was surprised when she picked me up in a messy car, since I stayed with her at DragonCon and her half of the room was very clean, but I figured that it’s a pretty common thing to have a messy car. However, I was horrified when we got back to her apartment building and she opened the door to the filthiest place I have ever been.

If you’ve ever seen the show “Hoarders” on A&E, you’d get a good idea of what I walked into. Floor-to-ceiling boxes spilled clothes and plastic containers and action figures on top of two couches coated in a thick layer of cat hair and crumbs. The TV had a film of filth, it was impossible to even get near the couches since the paths were too slim for a human to get by and I was unwilling to climb on the boxes, and more video games than a Gamestop poured out of collapsing shelves. Food streamed out of shelves in the kitchen onto the grimy stove, and was stacked so high in the fridge that it almost didn’t close. The second bedroom was so filled with boxes that there wasn’t even a way to reach in a hand and turn on a light - let alone walk in there - and the bathroom floor was crunchy with cat litter and various debris that turned the bottoms of my feet black when I tried to take a shower there later.

I’d been feeling stressed ever since I saw the place, but once I felt so filthy coming out of the shower, I finally broke down. I told my friend how hard of a time I was having in such a filthy environment, and we had an open and honest conversation where she told me how her own mental health concerns were preventing her from cleaning the endless amounts of nerd paraphernalia that I would have been so jealous of in any other circumstance.

Still, the fact remained that I was due to stay there for four nights and five days, and I wanted to attack the apartment with so much Clorox and Windex that it would smell like a hospital. I wanted to scrub the floors and the walls and collapse all the boxes and push a strong vacuum all over the place until it was sparkling clean.

I knew this was not something I could do, but I was still impressed that it took me to this point to feel my hands twitching at my sides with the urge to clean. I felt like, in some twisted way, I finally earned my OCD stripes, if the stereotype is to be believed. And I started to brainstorm if there was anything I could do, short of leaving immediately for the airport or a hotel, that would help me keep my friendship and any small level of comfort accessible to me in such an environment.

In the end, I talked with Nina about what I would need - a space with a door I could close, where I wouldn’t need to worry about cats crawling on me when I slept - and she agreed that I could sleep in her bed and she would sleep on the couches. I still didn’t feel like I could keep my suitcase open, eat anything that came out of her kitchen, or truly relax, but I was at least able to vocalize the way I wasn’t feeling safe and advocate for what I needed.

Most importantly, I listened to the voice of my therapist, D., who tells me to think of something I can control when I feel like my whole life is out of control. When my dog died, for example, she told me that I could control how I was going to handle my grief and remember him, and I ended up buying and filling out a remembrance journal.

In this case, I didn’t feel like I could leave before the day I’d planned to leave, but I was able to change my flight to make it about twelve hours earlier. Even that little change made me feel like I could control my surroundings somewhat, and I started to pull back from that edge of panic when I felt like my whole life was uncontrollable.

It’s a technique past therapists have discussed with me - negating my “all or nothing” thoughts by creating a contradiction. If I control one thing, after all, then it doesn’t mean that my entire life is out of control. It might be more than I would like, I told myself as I prepared to go out with Nina the following day, but soon I would be back in an environment I could control more.

Since I knew I was going to be there for the next several days, I did my best to get out of the apartment, whether that meant a walk outside or a very exciting trip to a local grocery store. I convinced Nina to go on a road trip since her car was cleaner than her apartment, and I took a tour of her aquarium workplace. Somehow, petting a shark felt easier than staying in her apartment!

There were other things I could control, too. I picked my own food, insisted on getting takeout instead of eating out in a state with far fewer COVID precautions, and texted my friends back home and my family. I watched too much TV, read nearly constantly, and played so many games that my fingers got sore. I even allowed myself to feed into some of my more obsessive tendencies when I spent two hours unpacking and repacking Nina’s amiibo figurines, tapping each one on my Nintendo Switch to get benefits in various games.

At the end of the trip, I can’t say I would ever visit Nina again if I was unable to stay in a hotel, but I was able to make it until the wonderful moment when I spread out the contents of my suitcase across the floor of my clean apartment, took out a bottle of Clorox wipes, and wiped everything - including the suitcase itself. I put in the laundry on the highest heat, took a long shower, and finally felt like myself for the first time in five days.

Although I’m pretty amused that it took me up to this point to indulge in such a common stereotype, I am also very proud that I was able to accommodate to far-less-than-ideal circumstances and pull myself back from the panic. As I continue to take steps towards normalcy after losing my dog, I hope I can keep fighting like this as I work toward the future I want for myself.

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.

Lost In The Stands Aisle

Trigger Warning: Death, Grief

I was in Michael’s picking out a stand for a new, lovely copy of the Silmarillion my parents and dog got me for my upcoming birthday, when my phone rang. I picked it up, I heard that my parents were in the car and my mom was crying, and I knew.

I knew that my dog, who was part of my life ever since I picked him out as a puppy fifteen years ago, had died. I didn’t know the specifics, which turned out to be a lot more peaceful than I ever could have imagined. It didn’t even feel real at the moment - he had been declining, and we were pretty sure he had liver cancer, but that didn’t change the fact that I hadn’t actually said goodbye to him and was nowhere near ready.

Luckily, I had run into a close friend in another aisle of Michael’s a few minutes before, and I texted them, telling them to come to the stands aisle. They stood with their arms wrapped around me as I sobbed, not caring that I was in public or that my friend didn’t even know what was going on or that COVID is a thing that exists. Everything fled out of my mind in that instant except for the horrible truths:

I am never going to get picked up at the airport by my parents and see my sweet dog getting excited in the back seat and feel him wiggle as much of his huge body into my lap as he can possibly fit.

I am never going to boop his snoot again, or even just hold my finger out and let him come to me and boop his own snoot (something he only did with me).

I am never going to spoon with him or watch Dr. Phil with him or lay with him as he falls asleep on the blanket I got him for Hanukkah that he slept in every night until the end.

I am never going to call home and ask to talk to him, only for my mom to exclaim that he’s licking the phone when I call him a good boy.

And yes, while I told him goodbye at the end of every time I visited, and had seen him a week before he died, I didn’t get to say a real goodbye and mean it.

In his life, there were a lot of “never again”s - including the fact that he stopped one of his cutest behaviors, squeaking while yawning, several years ago due to a collapsed trachea - but I wasn’t ready for the ultimate “never again.”

My friend walked me home, and we sat down by the computer, looking through old photos of my sweet dog. They let me share stories, helped me pick out pictures to tape in a grief journal my therapist recommended, and then I proceeded to distract myself as much as possible while still processing what was going on.

The only problem was, I couldn’t find a balance between distraction and processing. My dog died right before Christmas, which meant almost all of my friends were out of town, local events had stopped, and the days were short and bitterly cold. Sadness and loneliness felt overwhelming, and I had no idea what to do to get the more unpleasant thoughts of the reality of his death out of my head.

Even though I knew my dog was old and would die at some time in the near future, I wasn’t prepared to think about his body. When my therapist asked me what I would have wanted to happen to his body instead of cremation, I answered that I wished he could have just faded away into nothingness like Yoda. For the week it took for the cremation company to pick him up from the emergency vet in Florida, I couldn’t help but think about the fact that his body had to be in some sort of freezer. Far too cold, then far too hot, for a warm fuzzy friend.

I thought of his last moments, and even though it hurt my parents to ask about how things happened, I still did. I needed a story to tell myself instead of the horrors that my brain could invent. It comforted me to know that he didn’t pee or poop after he died and that he still smelled like his medicated shampoo.

There were some distressing details I fixated on, like the fact that he felt stiff when my parents took him out of the car. That - and the freezer and incinerator, which I imagined like the incinerator in one of my favorite psychological horror video games - stuck in my head for days, and I was unable to get them out. They felt almost like obsessions, except that there was no compulsion, nothing I could do to make the truth any less sad, scary, and disgusting.

Most of all, I felt a loss of control. I was terrified that Nana, who is 93 years old and has some health problems, would die too. I felt helpless to make my family feel better or to even improve my own quality of life. I wished that, somehow, someone could have known he was dying and called me so I could have said goodbye, since I was in no shape to have the existential crisis over whether the Rainbow Bridge - dog Heaven - is actually real.

But my therapist told me that even if my parents had called me at that very moment, I wouldn’t have been able to change anything. Death is a situation over which I have no control, and listening to everything happening but being unable to help might have felt even more frustrating. My therapist helped me list things I could control, and with the help of my family and the couple of friends who were still in town, I started to trudge through the days, learning as I went along.

I learned that healing looks different for everyone in my family, but we have certain commonalities - like stuffed puppies that look and feel like my dog and smell like lavender and can be warmed in the microwave for a hug - that we can do together.

I learned that, for me, it helps to imagine a positive story instead of dwell on the negative facts, and the same strategies - reminding myself of the positive thought every time the negative one rears its ugly head - is my best bet to get through this.

I learned that, unlike what I believed when I was a kid and getting bullied, it’s okay to cry, especially in front of friends. People who really care won’t mind, and through this experience, I have learned to treasure the people around me who have stepped up to take care of me when I’m usually the friend who gives care instead of receiving.

I even got to the point where I could go back to Michael’s and buy the book stand for what turned out to be my dog’s last birthday present to me, which now sits in a prominent place on my desk.

I’m nowhere near being okay about this, but I’m getting to the point where I can be productive at work, occasionally smile and laugh with my friends, and look forward to my upcoming birthday. It’s going to be a weird birthday, and things are likely going to feel weird for a while. But I have moved past the first, horrible wave of grief, and hope that one day, after more grief and growth, I will be able to cherish another dog who I tell stories about my beloved “little brother.”

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.

Role Playing for Real Life

Role Playing for Real Life

Last week, during my weekly Dungeons & Dragons session, I got proposed to.

Not by an actual boyfriend, or even for a real-life marriage. This proposal was for my D&D character, Kit, from her long-term boyfriend played by the Dungeon Master.

Still, though, before I started meeting with my current therapist, this would have been a terrifying scenario. Even though it’s not for real life, just the thought of roleplaying a proposal - especially one I planned for my character to say yes to - would have been too much.

Lately, however, I’ve been working with my therapist about how to get through scenarios from my past as well as my fears that haven’t happened yet, through roleplay. She sets the scene, just like the DM when I play D&D. Then, she asks me what the character (me at some stage in my life) is wearing, thinking about, and doing. Next, she brings in other characters - family members, a “protector” character I constructed in our sessions, or someone she’s invented for the scenario.

After all this preparation, we play out any situation I’m worried about like it’s D&D. She asks me, just like my DM does, where the different people and animals in the room are standing, who does what, who says what. She acts the other parts and as I try to act mine, I quickly find differences between the response I would want to say or do and the one that happened or that I think would happen in real life.

A lot of this requires living in the discomfort of the situation to figure out exactly what’s bothering me, then talking it out from there. Sometimes, the scenarios can take the whole time of the appointment; other times, we take a break from the scenario to discuss what happened, how I reacted, and what we can do moving forward.

I felt a little silly doing this at first, but after my first time going through a scenario, I realized how helpful it was. Additionally, it was wonderful to feel like she had developed this method for me based on my love of D&D, and found a way to communicate with me based on my interests to help me understand things better. It reminds me of the time I chose to read an analytical book about Middle-Earth instead of a particular textbook in college, and learned so much more because I was more familiar with the content and context.

Nowadays, my therapist and I are working on more scenarios about relationships. Ever since I had several bad experiences in a row, I’ve been very wary of getting in a relationship, even though I would love to have a boyfriend. Thanks to this method of therapy, I’ve been able to talk through the scenario of a first date before going on my first date in a very long time - and I was able to roleplay a new scenario of getting engaged outside of the context of therapy.

And I was able to have the reaction I would want to have if someone I loved proposed to me in real life - I smiled really wide, giggled into my hands as I held them over my mouth, and found a creative and cute way to say yes.

It’s not the same thing as a real-life proposal, but I was thrilled that after so much time working on this in therapy, I was able to experience what I would call a typical reaction to a proposal, and I didn’t overthink anything at all.

It used to be that, even in these roleplay situations, I would get overwhelmed with real-life feelings, thoughts, and implications. But this time, even though I wasn’t in therapy, I was able to just live in the moment, a skill I’ve been learning for years.

I don’t know when I’ll meet someone who I will want to propose to me in real life, but this experience gave me hope that I will be able to experience joy in this moment instead of intense worry, just like how I imagine it would be for someone neurotypical.

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.

Something To Be Thankful For

Something To Be Thankful For

This Thanksgiving, when I reunited with my parents, I didn’t expect to hear a story that reaffirmed something I already know - that my mom is an incredible ally for people living with mental illness - while also warming my heart at the thought of others doing the same.

As we took a walk in the not-so-brisk temperatures down South, she told me about something that had happened at work a few days before. One of her coworkers, Sandy (name changed for privacy), who is divorced and lives alone, was scheduled to work the night before Thanksgiving and didn’t show up. After several calls, three people - Mom, Mom’s boss J, and her boss A, started to get worried.

J stayed past the end of her shift to make sure there was someone at work, and she reached out to Mom to see if she could check in on Sandy because she lives in the same neighborhood. J and A kept reaching out to Sandy and the emergency contact she provided when she was hired.

In the meantime, Mom and Dad both went to Sandy’s house. They saw a silhouette moving around inside, but even after a while of calling her name and knocking on the door, they didn’t have any luck. They called J back and updated her; J and A initiated a 911 wellness check and then asked Mom to cover the night shift. Mom volunteered to do so and started to drive to work, about fifteen minutes away.

When she was almost there, J called her back, saying that she’d gotten in touch with Sandy. Sandy told J that she thought she was off that night and she was on her way; in response, J cancelled the wellness check and told Mom to go home.

But before Mom could get home, J called again. She said that Sandy had called, after pulling over on the side of the road, because she was crying so hard. She said she couldn’t go to work that night, and Mom turned right around to relieve J.

When she got to work, Mom found J on the phone with Sandy, who was crying so hysterically that she could hear her clearly even though J didn’t have her on speakerphone. Shortly after, Mom took over at work, J left, and the workplace stayed open when they thought they would have to close early.

In the end, A didn’t mind her employees being distracted, and didn’t hesitate to step in and help herself. J didn’t mind staying past the end of her shift, even when she had to be at the airport to pick up her daughter later that night. Mom didn’t mind all the driving or checking up on Sandy at her home. All three of them acted out of pure love and concern for someone on their team who was going through something, even during a busy holiday season when there was so much else going on.

When I heard this story, I was so proud of Mom and her coworkers for stepping up. As Mom said, “it was amazing to be part of a team where they were treating somebody with a depressive episode as seriously as a heart attack.” I wish this kind of story wasn’t so unusual to hear, but I am so thankful to hear it and know that there are people out there who care. There are so many people who find holidays hard, and knowing that there are communities out there who truly care means so much to me as I think about what I’m thankful for.

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.

Hurting to Help

Hurting To Help

This week, I finished my eleventh National Novel Writing Month - but this wasn’t like my usual NaNoWriMo experience.

This November, instead of writing a fantasy or science fiction novel like I usually prefer to read, I instead wrote the second draft of a memoir designed to educate people without OCD about what it’s really like - and help others who do have it to feel like they’re not alone.

To that point, the presence or lack of people who understand takes over a lot of the content. While writing, I had to remind myself that times are different now, I do have friends, and I am no longer the little girl who felt so lonely being the only person I knew with a mental health diagnosis.

I didn’t have the luxury of friends until I was much older, but when I was little, I wanted someone - anyone - to tell me that they also had something and their life was good, so mine was going to be good too. I designed the memoir to do that for others who might not know anyone else, who might find a friend in the book when they would otherwise not feel understood by anyone.

The tricky part was, I wanted to be as brutally honest as possible. I wanted to show the highs and lows in such vivid detail that people without mental illness would get a taste of what it feels like, and what some people go through every day.

Two problems quickly came up due to this approach: First, there is a lot of my own life that I don’t remember thanks to trauma, that I had to reach out to my family to ask about. It felt strange to be asking someone else about my own life, and yet I didn’t expect anything different. My psychiatrist told me a long time ago that the reason I was forgetting things like that was because of trauma, but it still bothers me that I feel like I’ve lost a part of my life to my head that I can’t get back, even by asking others. I can get their perspectives, but I can’t remember what I was thinking or feeling during these pivotal moments, which makes me feel like I’m missing something.

Additionally, I faced the problem of having to face that trauma head-on, especially in the case of my blood clot nearly ten years ago as well as the nervous breakdown two years after. I had written about both of these events before, but never in such explicit detail. In one of the essays in the memoir, I detail every single obsessive thought I had while I thought I was going to die in the hospital, from my fear of throwing up to my intense sadness of dying alone.

In order to make these essays as accurate as possible, I used the opposite of a therapeutic technique called “grounding.” Normally, people use grounding to remind themselves that they are in the real world and not in the middle of a traumatic incident, but I was using it in the reverse. I used the principles of grounding, including filling my head with sensory details, to make myself feel like I was there again. Although the writing turned out great, this greatly affected my mental health.

I’m so relieved to be done with this round of writing, and eager to hopefully share this book with the world sometime soon. In the meantime, I’m going to not think about the project for at least a month, to give myself time to heal. I was definitely hurting myself in the interest of helping others one day, and although I do agree with that principle, it was definitely too much all at once.

Even so, there was one positive side effect of writing about all these traumatic times: I was able to see how far I’ve come since I was first diagnosed, how I am able to live a successful life with a job and friends and financial independence, and that encourages me to keep fighting to improve life even more for myself and others living with mental illness.

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.