OCD Awareness Week 2020: My Monster

OCD Awareness Week 2020: My Monster

Throughout my childhood, I would have used the word “monster” to describe my head. I thought there was something so fundamentally wrong with me that could never be fixed, and then when I went to my child therapist, she encouraged me to see the OCD inside me as a monster who I had to beat.

It would take me a good deal of time to see myself as separate from my mental illness. For so long, I couldn’t separate the Ellie who felt magnificent when reading my favorite books or marvelous while I played my favorite games from the monster that lived in my head. As a fan of fantasy from an early age, I took to the imagery of fighting monsters in my head to help me fight back against the thoughts that plagued me.

Even with these images in my head, I found it extremely hard to forgive myself for what I perceived as failure. Anything from doing a compulsive behavior to obsessively worrying about something for a whole day made me feel like maybe the monster wasn’t something inside me, it was me after all.

Self-love has been difficult for me throughout my life, as throughout my childhood I berated myself for my interests, for failing to behave like other children, and for being - in my opinion - the worst coward in the world. My opinion of myself has improved over the years, even though I still find it very hard to think of myself as brave even when other people try to convince me.

I haven’t thought about this moment of trying to love myself and think of myself as a monster at the same time for a while, but I was reminded of it when I saw the International OCD Foundation’s activities for OCD Awareness Week 2020. The first challenge - and the one that stuck out to me the most - was to “draw your monster.” In other words, the challenge asked people living with OCD to draw a representation of what it felt like to have a monster in their head.

As someone whose artistic skills (or lack thereof) are nothing to brag about, I started looking online for pictures of monsters. Maybe, I thought, I could write out what I was feeling and come up with a way to describe a monster so well that it could be visualized by someone reading what I write. And once I decided to write about a monster, I thought of how I usually write new characters - I think of everything I can about them physically and emotionally.

I started to think about monsters. Did the one in my head have mucus that it leaves behind in a sticky trail? Perhaps it was gooey, grotesque, or gory. Some of the pictures of monsters had protruding bones or were just close enough to human to be unsettling. Did my monster walk on two legs or four, or some other fantastical number? Did it have shackles for hands, or wires to keep a prisoner inside? Or perhaps, did it have a fair form that belied its cruel inner nature? And what color would it be? Yellow, the color I hated for most of my childhood because it reminded me of vomit? Red, because even though it’s my favorite color, it reminds me of blood dripping and congealing?

I Googled monsters to get more inspiration, and after the obligatory pictures of the energy drink can, most of what I found was Cookie Monster, my favorite Sesame Street character. I instantly dismissed the idea because he is not at all scary to me, and since OCD is experienced through a life of fear, I needed something terrifying. I then realized that I would be equally scared if a demon-looking monster or something like Mike Wazowski from “Monsters Inc.” came into my bedroom in the middle of the night. In other words, just fear can’t cut it.

I took some more time to reflect on a walk around the neighborhood. What would a monster look like for someone who is scared of so many things, but this monster is the origin of all the fear? I thought that it might have to be something enormous like Cthulhu or Godzilla to encompass all of its facets. I tried to use my imagination, picturing monsters as I walked.

Surprisingly, I didn’t picture something like in the sample photos from the organization that depicted a one-eyed, many-limbed monstrous creature that looked like a villain in a Disney movie. Instead, I thought of a picture I found some years ago and saved in my mental health advocacy Pinterest board that felt more like what goes on in my head than anything else.

It’s a picture of a wolf pacing in the snow, circling and circling and circling until its paws bleed. The blood outlines a perfect red circle. The circle has to be perfect, just as OCD rituals have to be completed perfectly or they feel like they don’t count. But even in that picture, the monster is never shown. Just the wolf, emaciated and scared, yet fiercely determined. There is a fierceness in its eyes and the way it grits its teeth that shows that although it is still circling, it is fighting back as much as it can.

As I reflected more on the wolf, its dogged determination to fight back whether it’s alone or in a pack, I thought of animals in groups - and the answer came to me.

The closest I can come to assigning a monstrous form to my OCD is a large group of German cockroaches spread out across an apartment, a house, a life. I had an infestation when I was in grad school, and the experience felt similar to my overall experience with OCD:

Every time I entered the apartment, I knew that there were going to be cockroaches there, but I never knew where they would be. I didn’t know if they would affect me during a normal part of my routine or if I would have a day free of them. They were just there, endemic.

 Every time I saw a cockroach, I felt filthy and disgusting, just like how I felt every time I succumbed to the immense pressure in my head to do a compulsive behavior or act differently based on obsessive or anxious thoughts.

I didn’t know if a cockroach sighting was just going to be one single roach or a group of them clustered together, like when I found a large group in the shower when I fled there to escape other roaches. Likewise, I never know if a single derailing of my day will be all that happens, or if I will be assailed by negative thoughts on all sides.

Cockroaches aren’t inherently disgusting. Even though I’m so disgusted by them, the main thing that repulses me is the idea that they are carrying germs. In other words, they represent more than they are, and they give me a visceral reaction even though they’re not themselves able to bite me or harm me in any other way.

Cockroaches are small(ish) bugs like ants, which is what I’ve called my automatic negative thoughts since I went through cognitive behavioral therapy (CBT).

They also remind me of the experience of collecting the corpses of dozens of cockroaches only to be told by my building manager that I was exaggerating things, that he didn’t believe there was a problem, and I was far too sensitive. “One or two cockroaches are normal,” he kept saying, and he didn’t believe me even when I had fistfuls pouring out of the vacuum cleaner. Likewise, I have been told so many times that OCD is just in my head and I could overcome it easily. These people don’t see what is truly there.

And then there was the day when I was eating macaroni and cheese and a live cockroach walked out of the bowl. I dropped it to the ground, grabbed my purse, and practically ran to the nearest police station, desperate to get help from someone who would believe me. I ended up getting help from a very kind detective when I reached my breaking point with the infestation, something that has happened to me with mental health as well. It’s not necessarily a huge, traumatic event that breaks a mind, although it can be. Sometimes, it is the small things accumulating over time until there are so many things on one’s mind that another one is simply too much to handle.

Most importantly, even though my first reaction to cockroaches usually involves running and screaming, I can beat them in a variety of ways. I got them out of my old apartment with paper towels and by vacuuming them. I got rid of many of them by asking for help from my roommate, a detective who ended up declaring the building unsafe and in need of bug bombing, and with the chemicals used in the bug bomb. Some of the bugs were defeated without help and others needed help from a variety of sources.

If I had better artistic skills, I’d draw a pile of cockroaches hissing and writhing in pure anarchy, disorganized, diseased, but still looking like regular roaches. It can blend in, after all, but there is still something making it different. A certain attribution making it monstrous. And this year for OCD Awareness Week, I encourage everyone to think of the monsters that may be afflicting them and be kind and accepting to others, because we can never see their monsters unless they feel safe enough to share.

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.

CDO

CDO

I’ve seen the joke too many times to count: “I have CDO - it’s like OCD, but with all the letters in alphabetical order, as they should be!”

This joke - and the sentiment behind it - has always rubbed me the wrong way. Not only does it reduce OCD to a stereotype, but it also makes the OCD experience seem as trivial as an hour of organizing a bookshelf.

My bookshelf is not alphabetized. I have my books sorted by topic, because that reminds me of my local library when I was growing up. My house is also disorganized in many ways - dust bunnies lurk behind the furniture, my clothes are folded but not in any sort of neat manner (especially the fitted sheets, which I can’t figure out), and I press the snooze button on my chores app when I’d rather be doing something else.

In other words, just because I have OCD doesn’t mean I display every stereotypical behavior associated with it.

I do have some behaviors that approach the stereotype more closely. I like to have all the dollar bills in my wallet facing the same way and take the time to organize them even if I’m in the middle of a crowded convention shopping hall. When I shuffle cards, I like them to all face the same way too. I don’t have particular thoughts associated with these behaviors, more of a sense of malaise that has such an easy solution that I just do the behavior.

I was reminded of my behaviors and the unsavory joke when I went to my local UPS store over the weekend to mail some packages. After I was scammed out of the first puppy I was planning to get, I had so many self-deprecating thoughts swirling around my head that I decided to do something to get rid of them, and that something turned out to be making the money back by selling old collectibles. This shipment included five different packages with collectibles amounting to most of the money I’d lost, and I was thrilled to be able to get the matter out of my mind once and for all.

When I got to the store, I bought five bubble mailers, put the collectibles inside along with personalized notes to make sure I was sending the right product to the right person, and finally, I affixed a Post-It note to each of the bubble mailers with the address so things would be easier when I went up to the counter.

At the counter, things went smoothly, although I couldn’t help but feel worried that the packages would get sent to the wrong place, as the person checking me out removed the Post-It notes one by one and the packages were already sealed. I took it upon myself to place each package on top of the receipt that went with it, so that I was sure each one went to the right person. If they didn’t, I would have a mess on my hands and would likely lose a lot of money on refunds or shipping to the correct person, especially since one was international.

I felt, as I stacked the packages in the correct order of the receipt, that I was doing an atypical behavior - which, as I get very embarrassed by any sign I show of not being neurotypical - I promptly apologized for.

I was completely unprepared for the lady to reply, “Don’t worry about it, that’s something little - not like one of those OCD people I have to keep working with. They drive me crazy!”

I stood stock-still, unsure of how to reply. Someone with less experience in mental illness, or maybe someone who finds the “CDO” joke funny, would likely have chuckled and said something to affirm what she said. Instead, I looked down at my wallet with all my dollar bills organized in my particular way and couldn’t have felt more ashamed. I took out my credit card, paid as fast as possible, and hoped that the packages would get to the right place.

In the end, all five packages made it to the correct place, and they might have without my supervision. But I know that my own address had been messed up at this UPS store multiple times before, so I felt like caution was important. I was certainly not expecting to be confronted with a stereotype I hate and feel ashamed of myself at a time when I’d gone above and beyond to make myself feel better after getting scammed.

If I was braver, or perhaps had more of a penchant for confrontation, I would have told the woman that I am “one of those OCD people” - her words exactly, that have stuck in my head since the encounter. In my childhood, she might have pegged me as “one of those OCD people” from the way my behaviors were more overt and related to stranger things like touching walls and drinking in certain ways out of water fountains.

But because I pass as neurotypical most of the time now, unless I’m particularly triggered by one of the few things that can get me out of my very well-trained habits of projecting normalcy, she saw me as someone who might enjoy this joke at someone else’s expense. There was no way to tell if someone else with OCD or another mental illness - or someone who loves someone living with mental illness - was also in the post office. And I’m sure I wasn’t the first person she’s complained about “those OCD people” to, whether at work or otherwise.

Beyond the idea of people with OCD being reduced to a stereotype, I was upset at the idea of the disorder being thought of as just organizing things, like in the “CDO” joke. Even though the outward signs may look like this, these actions only come about due to a complex web of thoughts that refuses to dissipate until the behaviors are done. It’s so much more complicated than that. My OCD has complicated my life in so many ways, from making it hard for me to make friends in my youth to making it hard for me to try new foods now. It adds a new dimension of worry to almost everything I do. And in all of my years fighting it, I’ve never once felt the need to go through a bookshelf to make everything just right.

But the rationality of the “CDO” joke applies to me anyway, if you look at my wallet or my board games with everything organized just so. And for people for whom alphabetizing is an important ritual, this joke trivializes their experience and contributes to the culture of people using mental illnesses as adjectives instead of learning about how to help the people living with them.

In the future, I hope jokes like “CDO” will be a thing of the past, as people will realize that living with a mental illness is so much more complicated than observable behaviors. It’s a deadly disease that has claimed some lives and made others incredibly difficult, and it should not be a laughing matter. 

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.

PUTTING MY LESSONS TO WORK

Putting My Lessons To Work

In the middle of a work shift last week, I got a ping that I had a new email. To my surprise and delight, it was from a breeder in Wisconsin who my parents, friends, and I had vetted, saying that she had a litter of 3-week-old puppies I could choose from.

I immediately went on my lunch break, called my parents, and by the time my shift was over, I had signed a contract for the runt of the litter, a black and white spotted French bulldog puppy who looks like a miniature cow and completely captured my heart.

From that day onward, even though I know it was incredibly lucky to find a reputable breeder with a puppy ready to go home just 36 days after I first heard of her, I’ve found the wait nearly intolerable. I’ve bought all of the supplies she’ll need, given her a name from Lord of the Rings, and cross-stitched a picture to go above her food bowls. My whiteboard at home has a countdown to the big day and a paper chain and every morning, the first thing I do is change the number on the board and rip off a link from the paper chain.

As you can probably tell, I’m extremely excited about the puppy and have such an incredibly hard time waiting for the big day. I’ve been antsy and energetic, overplanning everything, and finding it incredibly hard to sit still when I think of the wonderful adventure that awaits me when I pick up the puppy. And knowing the way I think, I knew pretty quickly that my thoughts of this little puppy I haven’t even met yet were obsessive in nature, but since they were a positive obsession, I didn’t see any problem with indulging myself.

A few days later, I was having yet another conversation about puppy planning when a friend confessed to me that she was having a very hard time emotionally. Instantly, I felt terrible, and tried to shift the spotlight so she could talk about what she was feeling. But instead, she apologized to me for not being excited enough about the puppy.

I was reminded of a habit I had for many years that was extremely hard to shake and still catches up with me sometimes nowadays - when I get overly interested in something, I find it very easy to forget that other people have their own lives, interests, and goals that may coincide with mine, but don’t necessarily, and they don’t want to hear about mine constantly. In other words, just because I’ve learned to accept my positive obsessions doesn’t mean I need to force them on others.

When I was little, my therapist explained to me that a conversation was like tennis - in order for both people to enjoy it, we had to take turns speaking (metaphorically, hitting the ball back and forth). What she didn’t add and I later figured out on my own was that my conversation partner also had to be interested in tennis - or conversation about the matter at hand - to be an equal player.

In the beginning of this process, all of my friends and family have been very excited for me, supportive of my excitement, and curious to see pictures of the puppy and learn about the preparations I’ve made. But as time goes on, and more things happen in other people’s lives, my news will fade to the back burner for many people, and I don’t want to “hog the ball,” as my therapist used to say, by talking only about the one thing that will be consuming my interest for the next 31 days as of the time of writing this post.

I’ve tried to be more conscious in the last couple of days to make sure to ask about other people first, to always make sure to give them a chance to pick the topic of conversation, and when they do ask about the puppy, I respond to their questions and try not to ramble. I can’t say I’m perfect at it, and I can’t say it won’t get exponentially harder as my paper chain gets shorter and the big day approaches, but I’ve worked so hard over the years to play tennis fairly, as my therapist would say, and not overwhelm my friends and family.

In the meantime, I’m filling up my time by meeting goals like taking an hour-long walk each day, reading the four new books I have on my shelf before the puppy arrives, and potentially doing National Novel Writing Month in October instead of November this year to put my excess energy to use and make the waiting easier. I’m getting as far ahead as I can at work, cleaning and preparing my apartment, and shopping for things that will help this little cow-spotted puppy be as spoiled and loved as possible.

Towards the end of October, when I do take her home, I will surely be excited to share every moment. I also hope I’ll be able to use my “tennis” practice I’ll do in the next month to ensure that my relationships with friends and family remain healthy even when my home - and my heart - has grown by four paws!

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 RIGHT AMOUNT OF PANIC

The Right Amount of Panic

I was walking yet another loop around a group of friends at a local park when someone admitted his parents had tested positive.

I had no idea if he lived with his parents (turns out he didn’t), or even if he’d seen them in a while. But immediately, I felt panic coming on as my head rolled through scenarios like quarantining again, testing positive myself, infecting friends, or having to go to the hospital. I was afraid without any information at all, and my immediate response was to walk a little faster, getting myself away from him as quickly as possible.

I’ve faced internal reactions like this the more I’ve gone out. I never imagined, when I was so scared to take a short trip to Trader Joe’s with my dad, that I would feel comfortable shopping nearly every day, taking long walks past parks that have way too many people, and attending small gatherings.

It definitely helps that I always wear a mask and adhere to the principles of social distancing, but still, not everything works out perfectly. There are people who don’t wear masks and people who gather in groups, people who cough around me and people who crowd too close in store lines and on the sidewalk.

For me, it can be hard to figure out the right amount to panic. Sometimes, like when I heard a loud, throaty cough right behind me as I went to take out the garbage, I wanted to default to my childhood response of “scream and run,” a camp game I adapted for other purposes. Other times, I wonder if I’m being cautious enough, washing my hands enough, using enough hand sanitizer, cleaning my apartment enough, and doing a variety of other things I know are useful.

In situations like this pandemic, I’m afraid of swinging too far in one direction or the other. I know I have the tendency to set rigid rules for myself and follow them strictly, but a situation like this makes my method impractical. How am I supposed to know, after all, whether the person coughing behind me had some food stuck in his throat or was displaying COVID symptoms? How can I tell if the people not wearing masks already have antibodies, like one person I know, or if they don’t?

I’m trying to err on the side of less stress by taking on more and more tasks outside of my apartment. This is helpful to me thanks to the principles of exposure therapy - the more I do a certain thing that scares me, the less it will scare me, and I have definitely seen that in effect in the last week as I’ve gone farther and farther from home.

Unlike with conventional obsessive patterns, it’s not easy to look at a behavior and say that it’s “wrong” or purely fueled by problematic thoughts. If I wash my hands a dozen times in a day, it might not make sense during regular times, but it makes a lot more sense if I leave my apartment several times and touch things when I go out, like if I go grocery shopping or explore a local gaming store.

I’m using the same principles for social interaction - saying no to things that outright scare me, like very large gatherings, and during small gatherings, I offset anxiety by pacing (so I’m not too close to one person for too long), meeting outside, and wearing thicker masks with more layers. Certain things will still scare me, but by working towards a livable amount of panic for daily activities, I can try to put my life back together after so many months at home.

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.

Mental Health Strategies for High Holidays 2020

Mental Health Strategies for High Holidays 2020

by Anat S. Geva and Miriam Ament

We are living in abnormal and unprecedented times, yet the sun rises daily, and soon the high holidays will be upon us.  For many, the Jewish Days of Awe provide a moment in time to reflect on the previous year and an opportunity to be grateful for all that we have.  It is likely that this year will be different for many.  Masked and socially distanced, we will be unable to experience many of the holiday rituals. Without in-person high holiday services and large holiday meals with friends and loved ones, and during a period of uncertainty and racial reckoning, we may feel untethered and off-course.

Given how alone and overwhelmed many are feeling, it is no surprise that depression and anxiety are on the rise.  In fact, in response to COVID, there is talk of an upcoming mental health pandemic. If  you are feeling overwhelmed or anxious or depressed, do not feel ashamed. You are not alone.  Mental illness is common, and you should seek help.  

But know that feeling hopeless and despondent are not inevitable.   There are strategies you can try out to get through this period of time - especially during the normally boisterous and social high holidays.  Adopting the plan of action below can help take the edge off of an otherwise unsettling period of time.

1. Adjust your expectations.  When we thought this surreal, once-in-a-lifetime COVID disruption was going to be short-lived, we may have clung to familiar routines and maintained our personal and professional expectations.  But this way of living is not ending soon, and it is tiring. No matter how few or how many disruptions we may experience at home, we are all carrying extra emotional and cognitive weight on our shoulders - and that will slow us down.  So, just accept that this year will not be the same as last year.  Though you may end up watching more shows on Netflix than ever before or finishing a record number of novels, instead of anchoring yourself to past goals and expectations, accept that this is the new normal. In-person Rosh Hashanah dinner with family might not be happening, but apples dipped in honey will still taste sweet. Develop for yourself a new set of priorities, think about new ways to measure success, and honor the new pace of life.

2. Develop an attitude of appreciation. Try not to focus on what you do not have this year.  Instead, focus on what you do have. Ask yourself, what can you be grateful for that previously went unnoticed. Perhaps you now have the time to be aware of how helpful your neighbor is or how your childhood friend still makes you laugh.  Make sure you end every day by listing 3 things you are grateful for, and be sure to acknowledge and give yourself credit for things you have accomplished. Getting out of bed and walking around the block counts! Pay close attention to the holiday blessings; there is actually lots to be thankful for. These are challenging times, so it is important to highlight for yourself the successes; this will leave you feeling more satisfied and hopeful.

3. Create new opportunities.  Our inability to celebrate the high holidays in person this year opens the door for creating new customs and rituals.  History is replete with stories in which the Jewish people found ways to evolve and thrive, even after tragedy and destruction.  Likewise, we need to embrace the opportunity to rebound and personally grow from the current COVID-related challenges. Maybe this year, because you cannot host a meal at home, you and your friends each cook a dish for a Rosh Hashanah dinner and then you jointly donate it as a meal to a shelter. Or, because you have no guests to host at your dining room table, you find time to participate in a synagogue-curated Torah learning series. Do not wallow in the losses; it is better to create a new way of celebrating.

4. Connect with your tribe.  We may be socially distant, but we have an inherent need for human connection.  Find ways to connect with others who buoy your spirit and provide you with emotional sustenance.  We cannot meet in person, but online gatherings or even old-fashioned phone calls serve as a great way to expand your world and remind you that you are not alone. Zoom into high holiday services or call friends and family to wish them a Shanah Tovah.  Even if you have trouble motivating yourself, you will be surprised how much more fulfilled you will be once you take action and reach out to a friend - old or new.

5. Get physical.  Be aware of the way in which your mind, body, and spirit are connected.  And then, stop thinking and get moving.  Express yourself through dance, a run along the lake, or playing a (socially distant) sport.  Tennis, anyone?  Find an organization or synagogue offering an online mindfulness yoga experience. Let your body and its movement help you get out of your head. The impact on your emotional and physical health will be positive and long lasting. 

6. Give your time to others. Volunteering is a great way to make your community a better place.  Even helping with the smallest tasks makes a real difference.  Assemble small Rosh Hashanah care packages, send cards, offer to pick up holiday meal groceries, or prepare baked goods to spread some cheer. And, as an added bonus, dedicating your time as a volunteer has been shown to be good for your mental and physical health.  Moreover, it is a terrific way to expand your network and meet other people in your community.

7. Stay spiritually connected.  Consciously acknowledge your intent to be curious and quiet your mind using meditation or prayer.  Stop thinking about the stressors of the here and now, and instead, take the opportunity to experience the divine and open yourself to study and experience the high holiday theme of renewal.  Do this by Zooming into synagogue services (live or pre-recorded) or participate in a virtual meditation and self-reflection class.  These days, you have lots of options to choose from.

8. Feed yourself and feed your soul. You know what they say, sometimes food is the best medicine of all.  After all, nutrition plays a large role in wellness.  And, it turns out, the act of cooking or baking can be a therapeutic experience in and of itself. It is goal oriented, personally rewarding, and provides a sense of accomplishment; it is a natural way to achieve a positive mental health state.  Best of all, when you are done, you have something delicious to eat. So, continue with high holiday traditions by making familiar family favorite dishes and desserts, such as challah, noodle kugel, and apple cake.  And then engage with your wider family and friends by posting photos of the holiday table before the meal in your family text groups and/or on social media. 

9. Give yourself a break.  Let’s face it, these are challenging times.  Everything is harder, and it seems like lots has changed.  Some of us may have difficulty feeling engaged or wanting to particip ate as fully as we typically would during these holidays. Under the circumstances, such sentiments are understandable. Do not hold yourself up to the same standards as you did pre-COVID.  Instead, practice self compassion.  That means: be sure to acknowledge and recognize your feelings, whether you are sad, anxious, or lonely; and be less self-critical.  Everyone around you has had to adapt their expectations and has periods during which they struggle.  It is okay to feel the struggle, but know you are not alone.

10. Engage in the positive. Find ways to engage in activities that you associate with enjoyment and gratification.  These are things you find fun and rewarding.  Take zoom breaks, sit in the sun, listen to a song that helps you recall a happy memory, make a holiday meal for your elderly neighbor, participate enthusiastically in holiday services. Adult coloring books might be  the perfect thing for you; they quiet the mind and may help you reclaim the carefree attitude of childhood. Be sure to mix it up! Identify activities that are consistent with the life you want to live, and no matter what you choose to do, be sure to focus your awareness on the positive feelings evoked by your activity.  This will boost your mood and bring you joy throughout the day.

Dr. Anat S. Geva is the Director of Strategic Initiatives of No Shame On U. Miriam Ament is the Founder and Executive Director of No Shame On U.