A THOUGHT-PROVOKING "SUPERPOWER"

A Thought-Provoking “Superpower”

TW: Food, disordered eating

Earlier this week, for once in my life, I wanted to taste something bitter.

I had just received my supertaster test kit designed to tell me if I am one of a small percentage of people with a higher number and sensitivity of taste buds. I’d wondered for a while if I fell into this group because I seem to be a lot more sensitive to certain tastes and textures than other people in my life, even to the point of liking certain colors of the same foods better than others when my friends and family can’t tell the difference.

I also wanted to take the test because, after years of working on my emetophobia - the main source of my picky eating when I was a kid - I’m now willing to try more new foods than before, although I’m still a picky eater. I’m a vegetarian who doesn’t eat a good number of vegetables because I find them distasteful (looking at you, broccoli’s texture and brussels sprouts’ taste) and I still have many picky preferences.

In other words, I’m a picky eater whether or not I’m concerned that a certain food will make me throw up, and that really only gets me about a few foods (specifically, hummus, cuisines from regions of the world that I haven’t tried before, and any accidental exposure to meat because I think my stomach isn’t used to it).

I wanted to see if there was a biological reason for my picky eating for one major reason: Even though I’ve gotten to the point where my main source of obsessions and compulsions as a child is not a big part of my life, I am still very ashamed when I’m out with my friends (in non-COVID times) and still eat like a stereotypical child. I felt like it was part mental illness, part habit, and part something else I couldn’t quite identify. But for many foods, like tofu, it’s not that I’m afraid of the food - it’s that the texture and taste bother me to a degree that my friends and family don’t notice.

So I ordered the test strip, and since it’s genetic, I offered my mom the spare strip that came with the kit. We tried them in the kitchen one night before dinner because, if you are a supertaster, the paper tastes very bitter, and it would be nice to wash it down with something different. Mom put hers on her tongue first, and said she noticed no taste at all, no aftertaste, nothing.

As I looked down at the paper in my hand, I wondered what I really wanted. I wanted to be a supertaster because it would help explain some of my food quirks that aren’t OCD-related and might give me a fun fact to share at the dinner table instead of feeling ashamed or embarrassed about my food preferences. On the other hand, if I wasn’t a supertaster, that would take away an excuse and might spur me to try even more foods.

It didn’t take me long to identify the taste of the paper - which tasted, to me, like the most bitter mixed greens I’d ever had - and promptly spit it out. After chugging some water to get rid of the taste, I was happy. I even took a smiling selfie with the soggy test strip and the sheet of facts about supertasters because it made me feel like I was a picky eater for something other than my fault - something I’d never felt before.

Even with all the work I’ve done here over the last couple of years and the therapy I’ve gone through my whole life, I still saw a physical reason for disliking certain foods as being more valid than a mental one. It’s part of the stigma that’s become internalized inside me even though I try so hard to be positive about mental health. Even so, I still saw the last time I accidentally ate meat and panicked for hours as less legitimate, as if some part of me still saw that as a choice.

I thought I could be stronger than that, but with something like taste buds or a food allergy, I have no control, so I don’t feel weak.

I don’t see it as a character flaw to find the taste of mixed greens too strong to eat, especially if it means I can get some of my favorite Caesar salad with plain lettuce. It feels like a harmless preference to choose milk chocolate over dark or pick broccoli out of my lo mein. It’s like my nut allergy - I didn’t choose it. But whenever I see myself as giving in to an obsessive thought, I see it as a choice, even if it’s not - and then I see a negative reflection on both myself and my strength.

Taking the supertaster test - and finding my gustatory “superpower” - has been an interesting thought experiment in addition to the actual scientific test.

It made me realize how much I’ve held onto the idea of a “physical” condition like being a supertaster having more legitimacy even though OCD is technically a physical condition of a chemical imbalance in the brain.

It made me rethink how I try new foods - if I try something and hate the taste instead of fear it, I don’t have to do exposure therapy on myself to try to make myself like it.

And I’m allowed to be picky without being ashamed of myself, because if I look at how far I’ve come from the days of only eating plain cereal for breakfast, plain bagels for lunch and plain pasta for dinner, I’ve made tremendous changes to my eating habits that have really helped my quality of life.

Ever since I was little, I’ve known I’d never be an adventurous eater. But as an adult, and with these new results in hand, I feel more confident eating the foods I’ve learned to love and not doubting my validity as a person for having preferences in addition to obsessions.

Ellie, a writer new to 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.

THEY DRIVE ME

They Drive Me

Earlier this week, a friend asked me an interesting question: why do I heartily prefer one video game character over another in a situation where both are facing extremely similar traumatic pasts and current problems?

My friend asked because she knows about my struggles with mental illness and thought that I’d have equal sympathy for both sides of the story. And I do - but for me, sympathy isn’t what determines a favorite character. It’s that one character lives a life I’d dream of, and another lives a life of my greatest fears.

Both characters, D and E, experienced a traumatic event at about the same age. Both characters lost their families and navigated the world basically alone. But while D lived in the past, E was aggressively forging a path to her future.

It helped me associate with E even more that her trauma was more medical than violent. It also helped that there was a madness in D’s eyes that frightened me - not because it was alien to me, but because I’d seen that look in my own eyes. Thankfully not for many years, but it was there at one point, and for years after, I was afraid of seeing it in the mirror instead of myself. And even more frighteningly, he had no desire to get rid of that madness.

When I read a comic about these two characters comparing their experiences, that solidified for me the major difference between them and why I so heavily favor E over D. They discuss their differences over a battlefield, and D says that the voices of his past are disgusted with her and urge him to kill her. E then tells D that she had a very similar experience to him, which he never knew, and illuminates the difference between them succinctly and beautifully:

“I hear their voices too. But they don’t control me. They drive me.”

The image accompanying the words is even more powerful - D being dragged backwards by the hands of the ghosts he can’t or chooses not to fight, whether literal or figurative. And E charges forward, using the memories of things that hurt her to help her make a better future.

It instantly got me thinking. When I was little, I felt controlled by the voice inside me that told me I was going to throw up or break Mom’s back because I didn’t touch the wall a certain number of times or got germs in my mouth or sat next to a kid on Monday when he’d thrown up on Saturday (yes, of all the things that happened in my childhood, I still remember that one).

I remember hoping and praying that one day, I’d be able to wake up and the thoughts would all be gone. I never prayed for a day when I could live like today, where I still have obsessive thoughts, Automatic Negative Thoughts (ANTs), and other hallmarks of OCD. I never thought I’d be able to manage them - it had to be all or nothing.

I still have all or nothing thoughts today - they’re one of my most common type of ANTs. But I also know enough about thoughts to categorize them and work towards countering them. I still get overwhelmed sometimes, but the vast majority of the time, I am able to live my life the way I want it and use my OCD in ways that are helpful for me.

I use it to organize complicated projects at work and to inspire the “what ifs” of my story ideas. I use it to hit goals in games, win cutthroat Lord of the Rings trivia, and get joy from things like fandoms, conventions, and video games that I would likely not enjoy to the same obsessive degree otherwise. 

I hold the reins of my life tightly in my control. And although I have immense sympathy for people whose disease controls them, I am so afraid of falling into that pattern that I can barely stand to see it in the media. It reminds me of my childhood, my worst fears, and everything I learned about my paternal grandfather all wrapped up in a too-neat package.

To give both sides a fair chance, I played through D’s story as well as E’s. Even though I tried my best to give him a good chance, I couldn’t help but feel frustrated at making myself play a story that frightened me as he allowed the thoughts to rule his life and his world until everything fell apart. I’d only ever done something like that in a video game once before - a game that involved characters self-harm - but I still played it for the sake of fairness.

In the end, I knew for sure that I preferred the character who fought bitterly against her struggles was someone I identified with far more than someone who never tried.

Nowadays, I don’t pretend that I don’t take sides in the great debate of D and E. Among other fans of this game, I make my preference clear, and now, instead of not knowing how to express why, I bring back this comic.

There are so many times in my life when I could have chosen to get swept away on a tide of obsessions or trauma, could have surrendered any shreds of control I still possessed. But instead, I fought to reach a place where I could have the control over my life that I yearned for and deserved.

Inspired by the comic and the game that it is based on, I feel that I, too, am someone who does my best to let the past and the mechanisms of my brain drive me. They drive me to fight for my dreams, never give up, and encourage others who are undergoing similar fights to not fall into despair. Even if I didn’t know it when I was little, there is a world where negative thoughts can be kept under control and used in a positive way - and when I think of characters like E while I am on that journey, I feel encouraged, empowered, and ready to renew the fight for a good life.

Ellie, a writer new to 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.

"YOU DON'T MATTER"

“You Don’t Matter”

TW: Suicidal thoughts

It’s not a phrase I say to myself or anyone else often. But earlier this week, I told it to myself over and over as I did the best I could to help save a friend’s life.

It started after my first Zoom call of the workday, when I checked in on a friend who told me the night before that she was going through an extremely hard time. When I read Sami’s (name changed for privacy) message, my heart began to pound.

She described a sleepless night filled with horrific nightmares that she’d tried to chase away with Xanax, painkillers, and muscle relaxers all at the same time. She didn’t sound like herself at all, and at the end of the message, she wrote that she didn’t know how to go on, or if she could go on.

I instantly felt myself thrown back years, to the point when I locked myself in the chapel bathroom of my college because there was nothing in there that I could use to hurt myself. I was terrified, thinking there was no way out for me either - and then I reached out to my mom, who called my psychiatrist in a three-way call and got me on the fastest path to treatment.

It’s a time in my life that I hate to think about, but it was my only reference for the situation going forward. It didn’t matter that I have spent so much time trying to forget - it mattered that I remember the suicide hotline, the way I felt, the things I needed from those around me.

Our experiences seemed similar the more she told me, even though they had completely different catalysts. I was even taking Xanax at the time, thankfully stopping after experiencing reactive anxiety. As I talked to her, I remembered waking up early after fighting so hard to go to sleep, running over to the gym even though I’ve never been a fan of working out, just to try to get some of the nervous energy out of my system. I remembered how disgusting food seemed to me, how my best friend sat on the floor with me and coaxed me into eating a bowl of Rice Krispies with no milk. I wished to be sitting on the floor with Sami, helping her in any way I possibly could instead of being hundreds of miles away, behind a computer screen.

The only thing I could think of was to reach out to the chat line of the National Suicide Prevention Lifeline (https://suicidepreventionlifeline.org/), which I could do while being on my next Zoom call. I paid just enough attention to not call attention to myself at work while I typed everything that was going on to a counselor.

In that moment, Sami didn’t need my platitudes or what had - or hadn’t - worked for me. She didn’t need to know my sordid history with Xanax or the fact that I was so terribly scared. Instead, she needed to hear the suicide prevention counselor’s words coming from my mouth, and in turn, that would help those of us not in her situation figure out what to do next.

One of the first things the counselor asked me to write to her was to ask, point blank, if Sami was considering hurting herself. No euphemisms, he said - that way, there’s no room for confusion. It had been a long time since I’d written something like that, instead preferring to use euphemisms and hide from what I’m afraid of.

But that day, it didn’t matter that I categorically refuse to watch TV shows or movies with suicide scenes and often choose to skip ones that even mention it at all. It didn’t matter that even just typing the word “suicide” scares me. What mattered was that she needed someone to ask her if she was thinking of hurting herself, no matter what that might look like.

Any answer that isn’t a “no,” to me, is an unequivocal sign of danger. She said “kinda,” and that she was feeling weak and worthless, too much to carry on. She said how easy it would be to just take some more Xanax and slip away into sleep, never to feel the pain again.

At that point, I typed frantically in the chat, conveying her responses to the counselor. He helped me figure out some followup questions - how much medicine she’d taken, how she was feeling physically, and after the questions, to just let her talk and show that I’m listening.

She told me more about what had been happening, and eventually told me she wanted to try to sleep again. I was worried, especially since she’d taken another Xanax while we were talking, but at that point there wasn’t much else the counselor could do. He told me to dial the hotline and get some local help over to her just in case, someone to talk with in person even during the pandemic. Someone with more training than me, even though I wanted to swoop in and fix everything myself.

Back when I was experiencing suicidal thoughts, I remember who came to help me: two police officers, kind but seeming a little out of their depths as they didn’t really know what to say. They gave me a survey that asked a bunch of questions about my mental state as they drove me to the hospital, and the only one I remember is whether I was feeling hopeless. It was a straight-up “yes” from me, but I realized I couldn’t picture Sami trusting a quiz from police officers or wanting to be taken to a hospital. She wasn’t quite in the worst danger possible, and I couldn’t just impose what worked for me.

As I picked up my cell phone to call the hotline, I could almost see my reflection in the chapel basement mirror on the blank screen - but that didn’t matter at all. I dialed the hotline, then contacted a local organization on their recommendation.

Someone from the local organization called Sami, presumably told her that I’d given them her number and some basic information, and the counselor agreed with me that she seemed like she needed in-person help. Even though I wanted to stay texting with her for as long as I could, even if just to feed my insatiable desire to control the uncontrollable situations in life, my needs didn’t matter. She needed someone who could be in her house and help her, and the counselor sent over a crisis response team to help.

It fell to me to get them there - I had two different records of her address, one of which came from a mutual friend who’d been to her apartment before. I never had, so I ended up asking him the things the crisis team asked me when they couldn’t find her apartment. It didn’t matter that I was getting increasingly frazzled and had yet another call in a few minutes, and this one, I was supposed to be leading. It mattered that I tell everything our mutual friend said to the crisis team, even though I got off the phone only moments before my call was scheduled to begin.

All that mattered, in the end, was that the crisis team found Sami - crying, panicked, but alive - and they were in her apartment with her.

Only at that point, once I knew Sami was safe, did I allow my own feelings to matter. After my last work call of the day, I took a long walk with my mom, played video games with my dad, and hugged my dog. I ate ice cream, made plans to see my Nana (socially distantly and masked), and let myself feel overwhelmed and panicked and everything that I thought needed to come out earlier. I even started to grieve for a torn-apart friend group that might be too far gone for me to fix, that will hurt my own life but thankfully not nearly as much as Sami is hurt.

As someone who’s been sharing my mental health story for over two years on No Shame On U’s blog, I have a lot of experience with making my history matter. But this experience has showed me that listening to what is needed by the most vulnerable person in a conversation can be exactly the right thing to do. What matters most is finding out what really matters - and what can help someone in need find the way forward.

Ellie, a writer new to 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.

THE THERAPY GAMES

The Therapy Games

When I saw the byline of an article in a newspaper recently, my mind instantly transported me to the single-stall bathroom at work, where I took a call from a psychiatrist who I was hoping to see regularly shortly after I moved to Chicago.

My psychiatrist who had been treating me since childhood told me that, once I moved, I should try to find another provider who would be closer. That way, I could have in-person visits instead of phone calls (good old pre-COVID days), and my medication could be evaluated in-person, something that I’ve needed in the past even if I don’t need it right now.

I started looking up psychiatrists in the area, and soon found the name of the doctor who wrote this article. I emailed him and he seemed professional, and he set up a phone call with me to explain how the practice worked and set up an appointment. I took that call in the bathroom of my office, the most private place I could get to in the middle of the day, and looked forward to what would hopefully be another good therapeutic relationship.

Instead, I was greeted with some of the most condescending language I’ve ever heard from a professional. He would ask me a question, I would answer, and then he would completely disregard everything I said, all the while talking to me like I had never heard of mental health before, had never been diagnosed with anything, and had not - like I told him - gotten therapy for over 20 years.

I distinctly remember getting a look at my face in the mirror as he told me, “Sweetie, you don’t need to be afraid of getting therapy for the first time,” right after I finished telling him about my psychiatrist back home. My face was completely blank and - a rarity - I was stunned into silence. He took this as confirmation that his theory was right, and kept telling me all about how he was going to fix me, all the while I bit my tongue and lip and anything I could think of to not tell him exactly what I was thinking.

At the end of the call, he pushed very hard for me to schedule an appointment, but I told him I needed more time to think. I heaved a sigh of relief as I leaned against the sink, but I was also distressed that I hadn’t been able to find a good psychiatrist.

“That’s just one bad apple,” I thought. “They’re not all like that,” I told myself as I scheduled more calls that ended badly, wrote more emails that never got answered, and searched the Internet deeper and deeper with no results in sight.

Eventually, I found somewhere else to try. This place was downtown, relatively easy to get to from work, and even though the person on the phone was all too eager to try to get me to sign up for hypnosis, I still tried an introductory appointment.

As soon as I walked in, I felt like the doctor was taking me through a Buzzfeed-style “Are You Crazy?” quiz with completely irrelevant questions that felt like he wanted me to answer in certain ways in order to be his patient. I realized, halfway through his thick sheaf of paper, that I was trying to be a perfectionist and answer the questions “right” rather than be honest about what was actually in my head.

Needless to say, I never returned to that practice - but the problem persisted.

I kept looking around, having similar experiences with any place that was willing to even consider that I was not a “beginner” in therapy. Many places rejected me outright, as I didn’t need diagnostic services or an intensive “boot camp”-like program where I would have to take huge amounts of time off of work and spend thousands of dollars to “get me started.”

I branched out, starting to look for therapists in addition to psychiatrists. I could see a therapist, I thought, and then if I’m not doing well, I could go to my internist (who I chose for her experience working with people with anxiety) and let her know to change the prescription. It would be a pain - if it even worked - but that opened a lot more doors, and I was able to eventually find a place down the street from me with availability outside of my working hours.

I felt like I had to go to the fringes to find a practice that was willing to work with me and both my mental and financial situations, and even when I found a therapist there, I was surprised by many hidden fees and by the lack of understanding in much of the advice I received.

“Just quit your job, it’d make you happier,” the new therapist said to me when I told her about a problem I was having at work. It was right after the pandemic started, and while my friends were losing their jobs left and right, I felt lucky to have my job, even though I was at the point where I felt miserable every time I had to step into the physical office. But I was quarantining at home - many states away, in fact - and quitting my job then would only have made things harder for me.

After a few sessions, I figured out what was rubbing me the wrong way: she was always very keen on encouraging my thoughts, which I like in terms of creative writing, but can be harmful in terms of actual life practices. If I feed too much into thoughts, whether positive or negative, I don’t end up in a good place, and this has happened enough that I can recognize it now. But if a therapist is telling me to follow these thoughts, I feel conflicted and make mistakes.

It got to the larger problem of her not really understanding me or what I was looking for, and although the office is certainly local and convenient, I don’t know if I’d be interested in going back. I feel like I gain so much more from a phone call with a psychiatrist who has seen me through all my ups and downs and doesn’t need to offer me generic advice or encourage my bad ideas.

The sad part of this is that many of my friends never had that stable therapeutic relationship that I am so thankful for and have now fallen back on. I can’t even say how many times I’ve been told by a friend that they know they’re not working with a therapist who can help them, but this therapist is either the only option financially or in order to keep the fact that they’re getting therapy a secret. Or, they’ve played the games I have and gotten so disillusioned with the whole process that they don’t even want to try again.

I keep wishing I could send my friends to my psychiatrist, but even if I could, that wouldn’t fix the problem that so many people are facing - it’s so hard to get into a good therapeutic relationship that people are suffering for no reason. I don’t know how to fix it, but as I read that article, I found myself wondering about the patients of the doctor who wrote it. Did they genuinely enjoy his advice, or was the relationship one of convenience?

I hope that, one day, I will hear more stories like mine than like my friends’. I know that my relationship with my psychiatrist is a major reason why I’m doing as well as I am considering the severity of certain things I’ve faced. It’s something that inspires me to fight the stigma, part of which involves getting people the help they need. If it wasn’t so hard to find therapists, and there were enough easily-located options that people could have a choice, I think the system could be reformed to the point where no one has to play games with their mental health.

Ellie, a writer new to 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.

OLD AND NEW

Old and New

With the inauguration of President Biden yesterday, I and many people I know are thinking about change - out with the old, in with the new. This idea has me thinking about my greatest passion, creative writing. I wanted to write to commemorate the occasion, but lately, it feels like my ability to write stories is hindered by my seeming inability to create a coherent plot arc.

So, instead of something new, I think of something old. Thanks to the way thoughts cycle through my head, I relive the same scenes of the same stories in my head for years on end. I can do it multiple times in the same week - or the same day - and feel happy and creative every time. As I look for something new in my craft, however, I find myself increasingly looking towards how I’ve always written stories as repetitively as I think.

As I watched the inauguration, I thought back to election night in 2012, where I brought Cheerios to my college’s bipartisan watch party (good old picky eating) and noticed an older man hovering towards the back of the room. Sure, he was probably a professor, but I didn’t know him, and for whatever reason, I started to wonder what would happen if a senator who was up for election was not at home on election night.

“Why wouldn’t he be home?” I asked myself, and quickly answered my own question: “He is having trouble in his marriage and thinking of getting a divorce.” Later that week, I wrote a short story of that scene. The next year, I revisited my old idea and wrote a new short story about the woman he was having an affair with, and started to delve into his wife’s mental health problems. This story idea was three years old when I turned it into my undergraduate thesis for my creative writing degree, and I have never loved a story so fiercely nor fought for it so hard when I was told - frequently - that it was too much work, too much research, and I should quit.

The last few years, for National Novel Writing Month, I have done something similar to the process I used to create that novel. I keep a list of old ideas on my computer, and instead of brainstorming something new, I instead brainstorm a new take on an old idea. I’ll work on the same project over and over, bringing something new to the mix every time.

The story of a video game NPC (non-playable character) who gains sentience started out as a story of someone learning how the world works, and by the next year, it was about the conflict of extricating oneself from a toxic friendship while saving a video game world from a corrupt hero. The story of a prophet who hears messages from the wrong god turned into a tale of sisterhood across enemy lines. The story of a young man who works together with his brother’s ghost to save a friend and learn that there is more to life than avenging the past is something I’m having trouble with, but would love a new take.

I find it easy to put ideas like this on the back burner whenever it isn’t November, however, because I can so easily get stuck in ideas of the past. I feel such joy when I revisit scenes from old stories, whether original fiction or fanfiction of books, movies, or games that hold a special place in my heart.

I sometimes wonder if this feeling is as strange to people as the fact that I literally never get bored of my favorite foods or songs and could repeat the same menu or playlist every single day. Just as OCD enables me to worry about the same things over and over, and also come up with new and increasingly terrifying ways to worry about these things, it also enables me to find joy from the same things over and over.

I get the same thrill putting on a cosplay for the tenth time that I did the first, even if the fabric is starting to fray and the wig slides down my head all too easily. I’ve watched a special Cameo video an amazing friend sent me for my birthday, of a movie star from the Lord of the Rings movies singing to me and offering me trivia questions, at least a dozen times, and every time brings me the same euphoria as the first. Same goes for eating Italian food and “grinding” (repeating levels) in video games - it never gets old.

And yet, there is also an immense thrill to something new. When I first got that Cameo video, I cried so hard through the first playthrough that I couldn’t even hear what the movie star was saying. When I try on a brand-new cosplay, I feel so confident that I make friends easily and so energetic that I can at least double my usually-high daily step count.

In the past, I’ve always favored the old over the new, due to the ease and the fact that I don’t have to deal with change. But I’ve become inspired to try to do more new things, both in my writing and in my everyday life, as the country also starts something new. To get things going, I’ve ordered some picture cards - some of my favorite writing tools - and I will write a story about a completely new character when they arrive. Maybe this character will find a place in one of my old stories, or maybe, I will take the time to learn more about plotting and create a story just for them. It’s uncertain, which means it’s a little frightening, but just like all new things, it can also give a lot more than it takes.

I sometimes find it hard to appreciate new things, especially changes to my routine. But even during the pandemic, I’ve had time to appreciate new traditions instead of mourning for old ones, and whenever I read a new book, play a new game, or watch a new show, I always look forward to finding the next thing my brain will latch onto.

This year, I hope to find more of the fun of not knowing what happens next, instead of the fear. It’s a tall order, but a good step to take when so many things feel routine. Between my joy in the past and hope for the future, I hope I’ll be able to rekindle my writing soon. Sinking into a story wholeheartedly has always been my favorite part of my OCD, and it would be a welcome newness to the routine I’ve fallen into during the pandemic.

Ellie, a writer new to 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.