Beautiful Minds

Beautiful Minds

This week, I got to experience something I’ve wanted to for a very long time - a room full of people like me.

I found out about a Zoom writing workshop for people with OCD from the International OCD Foundation, and was excited at the thought of finding creative inspiration while making new friends.

The workshop was holiday themed, and before we began, we took some time to get to know each other. I was surprised to learn that the workshop included people from all over the world signing in at a variety of time zones of varying convenience; there were also people of different ages, genders, and life backgrounds.

As someone who has not interacted much with other people with OCD, I found it fascinating to observe how people reacted to different things. I could tell differences and similarities in my own OCD versus other people’s, something I have found interesting for a while but haven’t really had the chance to explore.

Growing up, I always wanted to know other people with OCD. I wanted to see if we had any obsessions or compulsions in common; more than anything, I wanted to feel like I wasn’t alone as I figured out how to live a successful life with my condition. The only examples I had were negative and very public; I wasn’t aware of people around me who I could ask questions or learn from.

Writing was a common denominator of a hobby for all of us on the call, and unlike what I’ve experienced in any writing workshop before, we started the session by working together on prompts. It started out pretty simply - we identified common symbols for holidays around the world - and then branched out into coming up with holidays for pictures of random objects.

Contrary to most of the time when I’m in a writing workshop, I mostly stayed quiet and observed. I wanted to hear other people’s ideas and learn how they got there - but when there was a prompt to come up with a holiday based on a photo of bacon and eggs, I gladly contributed that this could be a celebration of Second Breakfast Day.

After we moved to individual prompts, I took some time to reflect. I don’t usually share my passions immediately, but in this setting I felt comfortable. I knew that other people were doing the same thing, and the space felt like somewhere no one would be bullying anyone else for how they expressed themselves.

Some people were shy and some were loud; some were excitable and others overanalyzed every prompt. But in the end, what mattered was how the facilitator described what she wanted us to do with the various writing exercises: to show off our beautiful minds.

This phrase made me stop and think. So much of the time, it’s discouraged from showing too deep of a window into a mind that isn’t neurotypical. It’s easy to fall prey to that with friends and family to the point that there aren’t many opportunities to share what really matters. But in this setting, where we all had a mental health struggle in common, it felt like a space to not only be safe but be celebrated.

In other words, in addition to the made-up holidays we wrote about, we were all celebrating ourselves - something I’ve found to be incredibly rare among neurodivergent people.

Joining this group has inspired me to continue to seek community. The more it’s clear that we don’t have to suffer alone, the easier it will be to speak up and smash the stigma preventing us from being “out” in the first place.

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.

Reclaiming Pakli

Reclaiming Pakli

This week, my parents visited my cousin as he performed in his school play. I phoned on their drive home, and we got to talking about school plays I’d been in.

I went to a Jewish elementary and middle school, and most of the performances were in a combination of Hebrew and English. I was one of the top in the class in Hebrew, and always hoped this would catapult me into a lead role where people would have a chance to see me shine instead of the ordinary life where I was either getting bullied or fading into the background.

The most I ever got out of one of our singing shows was a single line from a song in “Hair” that was too high for me to reach the proper notes, but I practiced and tried my best and was overly pleased to wear a blue pixie cut wig on stage.

Then, in eighth grade, there came an opportunity to perform in a play entirely in Hebrew. Knowing that I wouldn’t get cast for singing ability or for teachers liking me, I did know that they needed people who could memorize lines in Hebrew and say them correctly. I thought that would be my way in since there would be no way to fake it like in some of the other performances.

The play was The Jungle Book, specifically the Israeli version, which has some differences to the American one. I hoped to play Baloo the bear, but I wasn’t disappointed when I wound up with a pretty big role from the Israeli script - Pakli, a squirrel.

Pakli served the role of narrator, which meant I got a lot of lines - including the very first part of the play. I got to interact with basically every other character and had some really fun physical acting, including a little dance to a song from “Mission Impossible.” I even had my own props - sticks and acorns designed just for me.

At the time, the only thing that upset me was that I was supposed to have a lead role in a song, but that was taken away from me and given to someone else who could never get the words right. I was told this was because I was a bad singer - but I knew I was good at talking, and no one tried to touch my monologues.

Over the course of the rehearsals, I started to like squirrels very much. I hadn’t really noticed them before, but they were quickly becoming one of my favorite animals and a continuation of a longstanding tradition of animals as positive obsessions. Today, you’re likelier to hear me squeal about goats, cows, and puppies, but back then, squirrels were the coolest animals in the world and I got to pretend to be one on stage.

I felt like a star. Even though the other kids in the show didn’t like me any better, I still got to perform in front of people - something I still find a thrill in now through improv and musicals.

Little did I know that when the curtains opened, my parents were angry.

Not at me - and I had no idea at all. They were supportive and loving, and it took fifteen years until we had a conversation this week about why they were mad about my part in the play.

I was surprised to hear this. After all, I still have a photo from the performance - the first time I ever wore makeup - and tell people about how heavy the life-size squirrel tail was for someone my height. I was proud of myself for having so many lines in my second language and memorizing them all.

But then, my mom pointed out the most obvious features about Pakli - that were also the most obvious things about me when I was that age: Pakli the squirrel never shuts up, and is constantly belittled and shut down by others around her.

I honestly never considered this when I took the part, and when I think about it now, I’m pretty sure I know why: I was completely used to being treated like this. I knew I talked all the time but had such a hard time not doing it, since whenever I wasn’t talking I was caught in an endless loop of obsessions and compulsions. Talking about my positive obsessions was my way out, even if I didn’t have the language to explain it.

And I knew that everyone hated it, and me by extension. I knew my teachers hated that I wanted to be involved in everything and do extra homework and socialize with them because they weren’t as cruel as the kids. And the kids were even worse - including the ones who told Pakli to shut up in the play.

I never saw anything unusual in playing Pakli that way because that was just my life. I had family members who listened to me and treated me kindly, but for the most part, I was used to being the person who talks too much, can’t help it, and is shunned for that.

I didn’t understand at the time that my mom was in frequent wars with my school, and the part of Pakli was meant as an insult - to call me out on stage for being the annoying person I was every day, always bothering people. I didn’t know until fifteen years later, when we talked on the phone and my first experience of being on stage became tainted.

The good thing is, I don’t plan to let it stay that way. I am going to process this like I do everything else, and quickly move on. I know who I was then and who I am now, and as someone with more experience sharing about these issues, I hope I can help others speak up about the way they are perceived and treated.

And in the meantime, I’m going to continue to love the heck out of squirrels. My most powerful Magic: The Gathering deck is based around amassing a squirrel army and I’m known for the strength of my “squarmy” in game stores across the Chicagoland area. I have a signed Squirrel Girl comic book and enjoy looking for squirrels on my frequent walks. I find it entertaining that I’m a squirrel fan who’s allergic to nuts - and less entertaining that several years ago, squirrels broke into the engine in my car and wrecked it.

Casting me as Pakli may have been meant as an insult, but I can choose to remember the joy I felt of being on stage, of being the first voice anyone heard in the play, of being the one who everyone was looking at and listening to. I can move forward to other roles in theater projects where I am treated well, and although Pakli will always be my first role, I am learning and evolving every day to become a person who is both me and socially acceptable.

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.

Next Steps

Next Steps

The process of becoming a more vocal mental health advocate has led to quite a few surprising things - many of which have come about thanks to being open with family, friends, and colleagues about the challenges I live with.

When I first started blogging for No Shame On U nearly four years ago, I imagined my advocacy as a solely online endeavor where I’d be able to hide my identity and keep myself safe. After being bullied throughout my childhood, and seeing how vicious people can be on the Internet and beyond, I was wary of sharing anything that could be traced back to me.

And so, I inverted what I usually meant by “personal” and shared the exact opposite of what I share with people in real life. Blog readers knew my medical history, but not my name. It was a strange way to interact with the world, but things got even stranger when - as I solicited more advice about publishing a book about my experience with OCD - I was told that I’d have to put a face to the fake name.

This week, I took another step in this process as I made a Facebook page to share memes, photographic examples of life with OCD, and old and new blog posts to people I have known for years. With some of these people, I prided myself on being such a good actress that they either didn’t know I had anything “wrong” with me or that I simply seemed to be a more anxious person than most.

When I sent invitations to like the page, I felt a pang of nervousness. It was like I was removing years’ worth of shields that I had erected to protect myself, in the hopes that the world had evolved in the time since then to the point that I would not become a target for no reason other than being myself.

The moment after I pressed the “send” button, I worried about what people might say. But unlike when I was a child, I have good friends now, people who care about me for who I am, not despite. I’m not in a position where I have to hold onto “friendships” with no reciprocity out of desperation for social contact. Which means that if anyone has negative comments to offer on my page, I can cut them out of my life and not have to worry about what they’ll do to me next.

In addition to inviting people to like the page, I also posted about the page to my personal Facebook profile. The post is visible by people who bullied me in middle and high school, some of whom have since called me “brave” for the same characteristics they used to pick apart.

I don’t know what to make of that, just as I have a hard time answering any compliments given to me about the work I’m doing. It feels so strange to talk about mental health in the open that I sometimes catch myself standing there slack-jawed like a dead fish before remembering to say “thank you.”

As I share who I really am with more people, I’ve noticed even more changes:

I’m beginning to lose the reputation of someone who is more mousy and submissive, and gaining one as someone who will speak up for what’s right.

People around me are more willing to take “no” for an answer without an explanation, which makes things easier in situations I tend to find hard - like eating out.

And so far, the comments on my Facebook page have made me cry - but not in the way I feared. People are offering respect and kindness instead of cruelty, something I never could have anticipated when I used to dread going to school out of fear of a new day’s bullying.

Things like this show me that we are living in a more tolerant world than when I was a child - and I hope that we continue in this direction.

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.

Safety Always Matters

Safety Always Matters

This Thanksgiving was hard on both my physical and mental health - and I’m not particularly proud that I ignored the latter.

I received my first-ever invitation to a friend’s Thanksgiving, and as someone who grew up a lonely kid and either did Thanksgiving with my immediate family or attended an extended family dinner in the Northeast where I never ate anything, I was so excited to feel like I would be a part of things.

I baked nut-free brownies since my friend and I are both severely allergic to nuts. I spent a long time picking out an outfit and some fun video games to bring, since my friend invited me to bring games and stay for the day, not just dinner. And I convinced myself that even if I didn’t eat much (or anything at all) for dinner, my friend knew I was picky and wouldn’t mess with me.

And so, I went to Highland Park for the first time ever this Thanksgiving - and it couldn’t have gone much worse.

I had been missing Reese, my dog who passed away nearly a year ago, quite a bit - which made me very happy to hear that there would be two dogs at my friend’s mom’s house. None of my friends who live nearby have dogs, so I thought it would be a treat to hug a dog for the first time in a while (aside from petting random dogs on the street).

I was only in the house for a few minutes when one of the dogs lunged for me and tried to bite my leg. I was able to dodge the worst of it since she was a smaller dog, but she did get a tight grip on my pants. I was instantly very scared; I felt my old fear of dogs from before Reese came into my life flooding through my veins as my heart started to pound.

My friend and her mom handled the immediate situation, but it didn’t take long for this dog and the other one in the house to start snarling and snapping at each other. I cowered on the couch, feeling trapped, remembering how narrowly I’d escaped a bite and thinking of the fact that I am on blood thinners and really, really didn’t want to go to the hospital.

At this point, I was told that I was being overly frightened. I retreated further into myself, playing my video game and doing my best to take advantage of every distraction. But the people there weren’t particularly friendly aside from my friend who invited me, and I didn’t feel any better until her mom and a few other family members decided to take the dogs - who were still fighting - to a local dog park.

Even though I thought that idea wouldn’t be great for the other dogs there, I was at least relieved that they would be out of the house. I was still afraid and didn’t calm down until they left entirely. I enjoyed spending one-on-one time with my friend like we do on everyday hangouts, but when her family got back, things got so much worse.

Even before the dogs had entered the house again, I was feeling anxious just knowing they were coming back. I was afraid of getting hurt, but since the attempted bite from earlier hadn’t done any actual damage, it seemed like no one but me really cared.

My friend’s mom also brought someone back to the house who my friend had never met. She brought a large gift bag of pistachios and started eating them with her hands, then offered some to my friend and I. Initially, she seemed apologetic when we told her we were both allergic to nuts, but her demeanor completely changed when she passed me something and I wiped it off (which I have to do whenever anyone has touched nuts or else I get a rash - it may look like an OCD behavior, but it is in fact for my physical health).

She went into the kitchen and started loudly confronting my friend’s mom about my “rudeness,” then proceeded to touch all the food in the room with her hands that were contaminated. Now that I knew I wouldn’t be able to eat anything at all, and knowing that I would not be safe in a house with someone who disregarded food allergies like this, I finally did what I had wanted to do for hours: I booked an Uber, went home, and ate Thanksgiving dinner by myself.

As I sat in the car, contemplating the traffic that likely wouldn’t have been there if I left when I actually wanted to, I wondered: Why did I not feel comfortable speaking up when I was anxious? Why did I wait to leave until it was my physical safety at risk - for the second time that day?

Even though I’ve spent the last almost four years of my life blogging for No Shame On U, I still fall prey to the stigma sometimes. I still think I’m not valid for feeling unsafe in my head and that I need to get used to things other people are used to.

I’m in two minds about this. Part of me thinks I don’t need to do things that make me uncomfortable just for the sake of pushing myself, but another part of me realizes that my experiences have been limited by my relatively small comfort zone and I need to get out of it sometimes. It’s finding the balance between these two frames of mind that I find particularly difficult, and what tripped me up the most on Thanksgiving.

I spent so much time sitting on the couch, playing a video game that I can zone out while playing, and thinking about what to do. I knew that I wanted to leave hours before I did, but I didn’t feel justified until something came along that would cause real, physical danger other people could see. In other words, the fact that I was afraid wasn’t good enough - I had to show other people that I had a good enough reason to leave.

I felt like just saying that I was anxious wasn’t a valid excuse to leave because my anxiety didn’t immediately threaten my physical safety. But when I talked through this with my therapist, she reminded me that feeling safe doesn’t only mean that you’re not actively getting hurt. Not to mention, my anxiety put me in a worse position when the nut allergy contamination happened - I had a much harder time explaining why I was feeling the way I was and getting myself out of the situation because I wasn’t thinking clearly.

This experience was a good reminder for me that I can say no to things if I don’t feel safe mentally or physically. I don’t have to be in immediate danger - if something feels wrong, I am allowed to listen to my head and my gut and that does not make me a coward. I hope that, the next time I feel this way, I trust what I am feeling more than the opinions of others and do what I know is right.

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.

What Support Really Means

What Support Really Means

Lately, I have encountered several examples of people trying to be supportive to those living with mental illness, only for it to backfire and make the person more anxious. So, what went wrong?

For both me and my friends who have experienced it recently, there is one thing in common: people want to be supportive, don’t know how, and instead of asking, force their idea of what they think will help.

I’ve noticed that, as I’ve become more open about my mental health with the wider community, that more people want to be helpful. This is wonderful! But, sometimes, it can make things worse if I feel forced to do something that makes me uncomfortable and my refusal isn’t listened to.

When people don’t take “no” for an answer, I feel overwhelmed. Sometimes, I even start to cry or need to do deep breathing to recenter myself. If people get pushy while I’m doing those things, it makes it even harder for me to refuse, and I often end up saying “yes” just to get out of the situation faster. Definitely not something I find relaxing!

In a recent situation like this, the person who was pushing me tried to explain what she was doing as: “This is what always helps me feel good.”

The sentiment was admirable, but at the same time, it’s extremely important to listen to the person you’re trying to help. They may not feel the same way about what works for you - and that’s fine! Everyone has their own ways of calming down and no two people are alike.

For example, I’m fully aware that my idea of a relaxing evening - eating gooey baked ziti while curled up in my late dog’s blanket and watching the Lord of the Rings trilogy - is not everyone’s idea of a good night. But for me, this is what works best.

Everyone knows their own coping mechanisms best, and truly supporting someone means doing what they need to do in that moment to feel better - not imposing your ideas of what you think will help.

It’s almost been a year since my dog passed away, and I still vividly remember how my friend John* (name protected for privacy) reacted: a big hug, walking me home, and asking what I needed. They suggested food, and I was unsure at first, so they dropped the idea until I was ready. I asked if I could share photos and memories of my dog, and they said yes and listened until I wanted to try to eat something. They were a bright spot of light on an otherwise horrible day, and the kindness they offered by listening to me was exactly what I needed.

Offering ideas isn’t a bad thing, but it’s very important to pay attention to both verbal and physical cues to see if the person is actually interested. Some people may have a harder time saying “no” especially if you are trying to give them a gift or do an activity together, but if they appear uneager or shy away, this may be a sign that they’re not as interested.

Writing this post gives me mixed feelings. I’m grateful that people around me are trying to support my friends and I, but at the same time, a lack of knowledge about what support should really look like means that it can make our mental health worse instead. To me, this shows that people are more interested in taking mental health seriously and being kind, and just need a nudge in the right direction about how to be most effective.

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.