Never Doesn’t Always Mean Never

Never Doesn’t Always Mean Never

I discovered one of my first positive obsessions when I was seven years old - and shortly after, I found out that it would be one of those things I had to keep to myself.

I first became interested in LEGO Bionicles when I was seven, the year they were released in the US. Instead of building a town or car out of LEGOs, these new kits let you build characters that were part of a fantasy adventure story I got to read in comic books I received every month. My old copies of the comics are torn and taped together from the amount of times I read them, and every time a new issue came, I couldn’t wait to dive in headfirst.

I’m pretty sure my parents were confused when I started playing with my new Bionicle figures together with Barbie dolls, making up stories for them together, and my interest in them quickly eclipsed everything else.

The problem was, I didn’t know anyone else who wanted to talk about them. It wasn’t just that people weren’t interested - they were actively disinterested, even to the point where I felt like I couldn’t bring up basic facts about my favorite characters without being treated like I was some sort of freak. The combination of an incredibly strong interest - and the fad being “for boys” - made me feel like no one would ever care about something I loved so much.

My parents and therapist encouraged me to keep my interest in Bionicles at home so I could avoid getting picked on. My parents bought me the toys and supported my passion behind closed doors, but I always wanted something I thought was impossible - a discussion with a friend where we share a mutual interest.

I thought I’d never be able to tell anyone that out of the six main characters, my favorite was Gali. Not just because she was a female superhero, but that she was one who wasn’t pink, designed to look sexy, or always coming in second place to the boys. I thought I’d never be able to tell a friend that Gali had awesome water powers, was a respected and powerful leader who doubled as a great mediator, and her second-in-command’s name was the same as my Hebrew name.

This week, I proved that “never” just meant I’d have to wait a couple of decades before having the conversation I longed for as a child.

I was playing Splatoon 3, a newly released online multiplayer game, with some people I knew well and others I didn’t know as well. We were all in a voice chat together, and while playing the game, one of our characters (who are based on various forms of marine life) turned into a crab. It struck me that the crab looked very similar to Bionicle’s Ussal crabs, my favorite creatures in the world because of how cute and resourceful they were.

Before I could remember to censor myself, I told the group that the crab character looked like a Bionicle crab. I had a moment of regret, but then realized that these were online friends, and if they decided off my one remark that I was weird, I didn’t really want to be hanging out with them anyway.

Much to my surprise, someone who I’d only spoken to once or twice immediately piped up, exclaiming that he’d noticed the resemblance to Ussal crabs too.

I immediately got so excited! After so long of having to hide various interests, I was thrilled to finally meet someone who I wouldn’t be inflicting my interest on.

I asked him who his favorite character was, and learned from him why he enjoyed one of the other heroes so much. And then he asked me about my favorite, and the two of us went off on a tangent that no one else quite understood, but felt like validation for me after so long of wanting to have such a basic thing of people showing interest in my hobbies.

My therapist calls this phenomenon a “corrective experience.” She says it’s things like this that show me that some of my childhood beliefs are faulty - it’s not that no one is interested in my interests, it’s just that I have to be patient and find the right people. It’s a good way to break out of my usual black-and-white thinking and the experience affirmed for me that even if my childhood interests weren’t the same as what most people my age cared about, I still deserved to be heard and finally getting that made me just as happy as I always imagined it would.

Michelle Cohen, 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.

It's Been 29 Years...

It’s Been 29 Years…

In Pokemon X and Y, video games released in 2013, there is a character named AZ. He spends what feels like eternity - and is in fact much longer than the average human lifespan - waiting for his dream to come true. The moment when it finally does, and he exclaims “it’s been 3,000 years…” was quickly turned into a meme used to represent the thrill of experiencing something you feel like you’ve been waiting for all your life.

I had my own “it’s been 3,000 years…” moment this Rosh Hashanah when I listened to a sermon from Nana’s synagogue where the rabbi explicitly and urgently fought for the destigmatization of mental health in the Jewish community.

His words touched me deeply - as someone who has never felt like there was a place for me in the Jewish community, I saw his speech as creating a welcoming space for the next generation so others don’t have to feel like I did.

As a child, teen, and even in college, I felt the pressure to perform well in Jewish spaces, and that always meant being the same as everyone else. But the only way I could do so was academically - I studied Hebrew so hard that I’m now fluent in it as a second language, and I memorized every tune for every prayer so I could perform at my best during school assemblies and prayer services.

I tried as best as I could to fit in with what was expected of a young person in the Jewish community. I was smart and accomplished, I “looked Jewish” (which was more of a thing years ago than now, thankfully) and did my best to act Jewish, but I couldn’t eat Jewish foods or make lifelong friends at camp or feel an instant connection to Israel the second I stepped off a plane at Ben Gurion airport.

The things I couldn’t do soon overcame the things I could, and I felt like there was no place for me unless I squished down everything that made me me, and just focused on being smart and learning what I was supposed to learn. But the Jewish community didn’t want me - they just wanted that part of me, and if the tiniest part of my real self came through, I was relentlessly bullied and made to feel less than everyone else who could somehow do everything.

My elementary school teachers did the best they could to fit me into a mold and made my parents and I feel like I couldn’t do a single thing right. My middle school principal regularly called me a freak even though I performed very highly in her Holocaust studies class. In high school, I joined United Synagogue Youth (USY), never fit in, and hated every convention (how strange those words sound to me now, as someone who counts down to fandom conventions for months at a time!).

In all of these settings, I performed well. I led prayers in USY for years, and proceeded to join my college’s Hillel and attempt the same. But when I had a mental health crisis in college, the Jewish community wanted nothing to do with me.

It’s why, as an adult, I struggle to go to Jewish events. I bristle at the thought of having to pretend I’m someone I’m not after fighting so long to accept myself as I am.

This rabbi’s sermon made me feel like there could actually be a place for me in the Jewish community.

The first and most important thing he did was to acknowledge the extreme bias against anything “not the same” in the Jewish community. He brought up the Yiddish phrase “shikker is der goy” - meaning “the alcoholic is a non-Jew” - as a metaphor for how the Jewish community wants to perceive people doing things that are socially unacceptable - such as having an addiction to alcohol - as outside of the community.

He said that, instead, we need to consider that “shikker is der yid” - “the alcoholic is a Jew” - and acknowledge the problems people face every day that are swept under the rug in an attempt to present a “model minority” of smart and highly accomplished people.

As an adult, I’m lucky that I can mostly “pass” as neurotypical. Just recently, when I received a speaking engagement to talk about mental health at a local Jewish organization, I was told by the person organizing it that she would have known I was an anxious person, but she would never have known I had an actual mental illness. She meant it as a compliment, and all my life, I was pleased to receive comments like this when my acting skills outshined my mental illness.

But even with my acting skills, I can’t pass well enough in the Jewish community. I can’t eat Jewish food. I can’t wax poetic about my experiences with Jewish people throughout my life. My proudest Jewish accomplishments tend to be more individual - reading the “Harry Potter” series in Hebrew in high school and college, learning my whole Torah portion for my bat mitzvah when I didn’t have to, and educating people about Judaism when they have questions or default to stereotypes.

This rabbi’s words gave me hope that, one day, I may find a place within the Jewish community where I can admit that my Jewish experience has been a mixed bag at best.

Where I don’t have to find a place to hide the little piece of challah I receive after it’s been passed by other people’s hands since I’m too worried about germs to eat it, even if it’s the only food at Shabbat dinner that I’d normally be willing to touch.

Where I don’t have to pretend that going to a Schechter school was amazing or that I didn’t spend the entirety of my two trips in Israel worrying about where my next meal would come from.

Where I can admit that I used the same prayers I memorized to look smart as a child as an essential part of my compulsions.

Where I can admit that, like many Jews, I have questioned God - if for a different reason than many - and have open and honest discussions about how to return to a higher level of faith.

I’ve been waiting 29 years - since I was born Jewish - to hear someone in a position of authority take a strong stance on mental health. Ever since my years in USY in this same congregation, I waited and wondered if there would ever be a place for me - and now, after everything that’s happened, I’m starting to think it might be true.

Michelle Cohen, 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.

The Value of Honesty

The Value of Honesty

TW: Suicide

This week, I saw something I have never seen before: an obituary that honestly and openly deals with the fact that the deceased person ended their own life.

The obituary was for 25-year-old Cody (name changed for privacy), the son of two people who worked at my college. I had met him a couple of times; he seemed smart, kind, and passionate about the things he cared about. As his parents were helpful to me during my own tough times in college, I stayed in touch with them and was distressed to hear that Cody died by suicide last week.

It was a surprise to find this information out directly. As part of my job, I am responsible for reading and editing obituaries, and I’ve never seen one related to mental health where you don’t have to read between the lines. Usually, the obituary in question will have a relatively young age, won’t discuss the death at all, and will end with a request for donations to a mental health organization.

In contrast, when I read Cody’s obituary, I knew immediately what had happened - and not just from the statement his parents released to friends and family. I could tell from the fact that they said he died at home - and the fact that his parents mentioned multiple mental health diagnoses by name, including the one that caused Cody the most distress at the end of his life.

I’ve never seen someone openly acknowledge someone losing a battle to mental illness. I’ve seen a few memes on mental health advocacy Pinterest boards saying something like “we’re not ashamed when people die of cancer,” but in the real world, I’ve never actually seen a person’s loved ones be willing to share that their family member died by suicide.

In some cases, it’s embarrassment or a fear of religious repercussions - like not being able to bury the family member in a cemetery associated with a particular religion due to the cause of death. But ever since my own experience with suicidal thoughts years ago, I really felt the power of the stigma against mental illness when I was shunned and ostracized by everyone at school except for one friend who stuck by my side.

People treated me like I was insane for telling them how much pain my mental illness was causing me. One rabbi whose family I had been particularly close with distanced herself from me to an extreme, terrified that I would hurt her young children (who I had been babysitting since they were born - not to mention that I was never going to hurt myself or others).

When I saw Cody’s obituary, I was astonished to see that the disease that took his life was OCD. I have only met a few other people with OCD, and none of those people ever had a crisis like I did after my blood clot. People around me had a hard time understanding that I hadn’t snapped, lost my grip on reality, and turned into some kind of violent maniac - I was just me, overly scared of my own head for coming up with these thoughts as a solution to trauma flashbacks and round-the-clock panic attacks.

In addition to feeling seen in this way, I was glad that his parents shared about his interests and positive obsessions, the things that made him happy and how much love and care he shared during his life. I was glad to see that they hoped his life would be used as inspiration for other people living with mental illness and an impetus to treat these people - as the obituary says - with “compassion, gentleness, and love.”

I hope that Cody’s obituary might be able to help other people who are considering ending their lives, or ease the pain of people who have lost a loved one. When more people are willing to share honestly and openly about how mental illness has impacted them and their families, we as a society take an important step toward reducing and eventually eliminating the stigma of mental illness.

Michelle Cohen, 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.

The Flea: A Case for Patient Potrayal

The Flea: A Case for Patient Portrayal

For children diagnosed with mental illness, it’s important for them to gain an understanding of their condition while also showing them that it’s possible to live a good life.

This week, I’ve been thinking about my own introduction to OCD - as well as a children’s book I read while in grad school - and I’ve come to realize just how life-changing it could be to receive this information from a person living with the condition instead of a third party.

I remember how, when my child psychologist first introduced OCD to me, she didn’t use the acronym or tell me about what I was doing in therapy. I thought I was taking extra classes, like in school, except that I was confused because I was always a stellar student who didn’t need extra academic support.

These sessions, though, weren’t like typical classes - and the psychologist explained to me that my brain works differently than other people’s and recycles thoughts instead of throwing them away. It was my job, she told me, to make those thoughts go away.

I didn’t know why my head worked differently, but I quickly understood that my real job was to do my best to be like everyone else. As an adult, I’m still unlearning some of the adaptations I used back then - one of the many reasons why I hope to publish my book and share my journey with young or newly diagnosed people who might not know much about the disorder beyond an individual practicioner’s explanations.

I also hope that, by sharing stories in this blog and my book, that I can combat more misleading and harmful portrayals of OCD by people who don’t know the disorder from personal experience, such as one children’s book I discovered in a children’s literature class in grad school. 

In the book, several farm animals suddenly develop OCD-like symptoms thanks to a flea, named O.C. Flea, appearing. The animals’ symptoms are described as “strange” on the first page and the speech the flea delivers about his intent is disturbing on several levels.

The first problem with portraying OCD as a flea is that a flea is an external source. This might not seem like a huge problem, but it’s absolutely incorrect to say that OCD is like hearing voices spoken by someone else. The idea of a little flea telling the animals what to do is not only deeply inaccurate to the nature of OCD, but also potentially scary for young children.

As a child who obsessed about germs and bugs, who was always terrified of coming home from school with lice, and who still shies away from most insects even at the ripe age of 29, I would have been even more frightened to think of my OCD as a bug, especially one known to carry many diseases. I also would have hated the thought of it spreading to people I loved and might have isolated myself further upon reading this.

Last but definitely not least, the flea’s introductory speech of “From now on you are going to do everything I tell you to do. If you don’t, you will feel really awful, and bad things might happen to you. And if you tell anyone about me, all the bad things will happen!” rubs me the wrong way for several reasons, culminating with the fact that the child is being encouraged to not tell about what’s going on in their head - which can delay or indefinitely stall proper care.

I’m not entirely sure what kind of metaphor I would use to explain OCD to a very young child. Personally, I’ve never really been able to picture my OCD as anything other than a part of my brain - even though I love all sorts of fantasy and science fiction. But it’s books like this that have impressed upon me the need to have someone who understands what daily life is like to create an accurate explanation.

As a writer, I frequently research the subjects I incorporate into both my stories at work and the ones I entertain myself with at home - including different mental health diagnoses. I’m well aware that I’m coming at these subjects as an outsider, even if I have friends with similar lived experiences to what I’m researching. I know that there’s no way for me to fully “get it” aside from trusting the stories of people who have been there before.

I sometimes wonder if I would have judged myself less as a child if I knew other people with OCD, if I didn’t think it was “strange” or “weird,” if I didn’t trust bullies instead of my family because I figured that such a large number of people couldn’t be wrong. It’s why I hope to continue educating people about what I’m qualified to teach, and learn from others what I don’t know. It’s only with this openness that we can have a real understanding of mental health that goes beyond stereotypes and assumptions.

 Michelle Cohen, a writer in the Chicago area, was diagnosed with OCD at age 3. She hopes to educate others about her condition and end the stigma against mental illness.

A Day Off

A Day Off

When I read books featuring characters living with mental illness, I always wonder if my main pet peeve will happen. It always bothers me when the plot catches up to the characters and they mysteriously lose all signs of their mental illness before facing off against their biggest foe.

A character who has anxiety meeting new people is suddenly able to make a rousing speech and inspire a revolution. A character who panics frequently becomes mysteriously calm before fighting a dragon or climbing aboard an enemy spaceship. And specific disorders like OCD are often not mentioned in books at all, so there’s hardly a chance of a character experiencing an obsession or compulsion in the plot’s climax.

As a child, that was always a mystery to me. I often wondered: How did the characters do it? How did they conquer their hardest challenge with so much ease that the author didn’t even have to write anything on the page? I wanted a how-to guide to help me do the same thing so I could go on an epic adventure. I thought there had to be some kind of secret I didn’t know yet, some esoteric knowledge about how to do this that I was going to discover when I got older.

What I realized instead was that the authors were relying on one of two flaws to get them through: laziness or the assumption that someone displaying symptoms of mental illness can’t actually do a quest.

In terms of laziness, some writers don’t want to figure out how to incorporate mental illness into a plot that is likely complex on its own. It can be hard enough to get characters to a certain point without giving them further challenges, but at the same time, it’s disheartening to see that the writer wasn’t willing to try to brainstorm a solution.

The worse option is that the writer might believe there is no way for a character to “feed into” mental illness and also get through the plot of a story. In my opinion, this erases the value of representation the writer was trying to get across, since in the end, the character was able to get a day off from their mental illness to save the world (or whatever else the plot may be).

As someone who has literally never had a day off, and who is currently smarting from a long day of overthinking and feeling overwhelmed by the tasks I have yet to do, I feel discouraged when I see a writer do this. I feel like the problems in my own life are more insurmountable because of the lack of belief that it is, in fact, possible to solve a problem even when dealing with extra problems on top of it.

Throughout my life, I’ve had to deal with a lot of problems. Nothing quite like what I’d find in a fantasy novel, but still, I’ve had to work my way through my fair share of difficulty without the “easy way out” of simply pretending my OCD doesn’t exist. And, as a writer myself, I wanted to see if there was a way for my favorite genre to feature characters using their mental illnesses as a way to help with the plot, not as something to throw away when the going gets tough.

This is why, when I had the opportunity, I loved co-writing a musical featuring Tass - a fantasy mechanic with OCD - but felt overwhelmed at the thought. I was very keen on the idea, but I didn’t have examples of fantasy characters with OCD to base my story on. I didn’t have anything to go off except my own experiences and books I didn’t like - and sure, it took a lot more thought and brainstorming. But in the end, I was able to find a way for Tass to use his obsessions to help with the plot instead of ignoring them to make my writing process more convenient.

And, in my own life, I try to remind myself of this. On hard days when every little step of what should be an easy task feels like an obstacle, I pretend that I’m living in the outline of a story and tell myself that there are always options. They might not be quick, easy, or practical, but they do exist, and there’s nothing stopping me from continuing to brainstorm until I find something that works.

Sometimes, I wish I could take a day off from my OCD. I wonder what it would be like to go through life without being anxious so often, to not overthink every move I make. But for me - just like it shouldn’t be for writers creating characters with mental illness - it’s not an option, and the best thing I can do is hone my creativity for both fictional stories and real life to help me find optimal solutions.      

 Michelle Cohen, 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.