Things I Can't Plan For

Things I Can’t Plan For

Many people who know me enjoy joking around with me that I over plan absolutely everything. They’re not wrong, and I get a kick out of the harmless teasing - especially when I’m aware I’m going overboard.

Take my upcoming trip to New Zealand, for example. In terms of overplanning, I’ve done just about everything. I booked the vacation eleven months in advance and started planning activities and packing the moment I found out I was going. Months ahead of the trip, I was thinking of how I would plug chargers into the wall and which snacks will get accepted through Customs.

But as the trip finally (!) approaches, I am struck by the inescapable fact that there will be plenty of things I can’t control.

In my daily life, I try to control as much as possible. It helps me stay calm and regulated, and being in my routine is a comfort that makes hard days easier and easy days a breeze. But with a trip like this, there are so many things that are out of my control - whether or not the airplane is on time, the weather where I’m going, the prepaid meals, the other people on the tour.

As someone who tries to control as much as I can, my parents were surprised that they had to tell me about a particularly nasty wave of storms that recently hit Auckland - where I’ll be landing. Many flights were turned around, including one that traveled from Dubai and was in the air for 13 hours before landing right where it started. And on the ground, many of the places I have written down in my meticulous travel journal were closed for repairs from flood damage.

My parents were surprised that I didn’t feel the need to look up the bad things that were happening, but for me, the decision was easy. My therapist and I talk a lot about things I can and can’t control, and since this is a huge, uncontrollable storm, there’s no point in me trying to brainstorm solutions or read every sordid fact until I start spiraling - because there’s nothing I’d be able to do about it.

I’m hoping and praying for a trip that goes according to plan, but there is no way of knowing that’s actually what’s going to happen. I don’t control airlines, weather, or other countries’ regulations. All I can do is take what actions I can here - like quarantining whenever I’m not at work to lower my chances of getting sick before the trip - and hope that everything turns out okay.

The other day, when I was on the phone with my parents, they reminded me that even if everything doesn’t go exactly to plan, this is still going to be my dream trip and a vacation of a lifetime. Even if I imagine things going differently, or would want to plan things another way, I am still going to love it.

I don’t know if I’m going to spend much of my free time with other trip participants or alone. I don’t know which meals will be okay and which will send me on a mission for “second dinner.” I don’t know what props and models are for sale at Weta Workshop and I don’t know if I’ll get to see every animal I want to at the zoo and wildlife sanctuaries.

In other words, all I can do is pack what I know I’ll need and sign up for a sense of adventure I don’t usually have. It’s a little like Bilbo Baggins rushing out of his house in a pose I will soon reenact on my visit to Hobbiton - charging confidently into the future, having expectations of how things will go but no guarantees that anything will go exactly that way.

All I can hope for is that, just like Bilbo, I will have a life-changing adventure that keeps me happy for a long time to come.

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.

I’m Not Broken: A Breakthrough

I’m Not Broken: A Breakthrough

When therapy is portrayed in movies or TV, it’s often full of breakthroughs - big moments of understanding that change the patient’s perception of themselves or the world.

In real life, this is less common, but it still absolutely happens. One of my favorite ones from childhood was when my psychiatrist told me I was allowed to obsess about things I loved instead of fighting against my obsessive thought patterns all the time - and this has led to everything from fandom conventions to my upcoming adventure of a lifetime in New Zealand.

Breakthroughs may be rare, but they are still wonderful when they happen - and I’m excited to share that, this week, I had one.

It came from a combination of a therapy appointment and a chat with a rabbi who I have been meeting with about an upcoming speaking engagement. Before we got to business about my talk, he followed up on something I shared the last time we met, about the way people sometimes try to delve far too deeply into my business in a misguided attempt to help (see last week’s blog for more info).

He mused if that was why I sometimes feel uncomfortable in the Jewish community, which I have noticed tends to encourage a culture of extreme helping. I absolutely appreciate help when I need it, but I bristle when people won’t let “no” mean “no” or demand to help with things they can’t help with.

It’s the same principle as “Jewish mothering” someone with food. Sometimes, people want or need the food; other times, it’s pushy and hard to deal with in a respectful way. I know the people are well-meaning, but it doesn’t make it easier to say “no” when no one will listen.

It occurred to me, as we talked, that I didn’t mind this as much when I was growing up. I went to a Jewish school through middle school, a youth group in high school, and Hillel in college, but it was only in the last few years that I started to really notice and resent this kind of “help.”

Between my talk with the rabbi and my weekly therapy appointment, I realized that this is the same timeframe when I was working on my blog - anonymously at first, and then starting my journey as an open mental health advocate. And then, it hit me why I was bothered.

When I was younger, I believed that everything I was doing was wrong or bad if it had even the slightest relation to OCD. If I was eating strangely, performing a compulsion, or standing by myself in the middle of a social gathering, I felt like it was my fault and it showed that I was deeply flawed. I listened to the advice from people to help me fix these things because I believed that I needed to be fixed.

The big change now is that I don’t think I need to be fixed anymore.

Yes, I have a diagnosis - but that’s not a character flaw as much as something that I live with. I have friends who live with chronic physical health conditions that don’t feel like it’s their fault for having to do certain things differently, and the only reason I felt that way is because of all the stigma I internalized.

I believed what I was told by society, and thought that because this diagnosis was something wrong with me, I needed to fix it. But there is no cure for OCD, or for many other mental illnesses. The cure is finding a way to live a good life with it, not some magic pill that makes it all go away.

As a child, I used to dream about that magic pill - and I saw advice from people as a way to get closer to what I thought of as a “normal” life. But now, as I told my therapist, I love the life I have, OCD and all. I love the positives it gives me - like the trip to New Zealand - and have learned tools to deal with much of what comes up in day-to-day life.

So, when people try to fix me, I feel resentful because I now believe that I’m not broken. Being different isn’t inherently bad or wrong, and even if I can’t do certain things that people want me to do, I am still a human being living a completely valid life that I enjoy. Eating a new food or joining a club to help me make friends is not going to make me “normal,” nor would I want it to.

As I’ve been preparing for my trip, I’ve sent periodic updates to several friends, including Alex, my best friend from college. I told him that he could have had a normal best friend, but instead he got me packing weeks in advance and counting down to the trip in heartbeats (as I have been for the past 10 months) and making jokes about second breakfast.

His response was: “Normal” is boring; I much prefer the second brand of best friend :)

The more I surround myself with people who are kind and accepting, the harder it is to accept well-meaning advice coming from flawed reasoning that I need fixing. I know it’s something I’ll need to deal with in the future, and I’ll work on ways to do this in therapy - but knowing the reason why these remarks bother me actually makes me feel a lot better. It shows me that, after so long, I’m finally confident in who I am - and I can use this confidence going forward to help myself and others live a more successful life with 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 Downside of Sharing

The Downside of Sharing

One of my favorite parts of being more open about my mental health journey is the conversations it sparks - but sometimes, they can go too far.

For the most part, when people ask questions about my OCD, they’re polite and respectful. I can tell that the questions come from a place of wanting genuine understanding, and so I’m happy to answer them.

The problem is when people see how I am adapting to a particular situation and decide that I’m doing it wrong - and that they have a solution I need to implement.

This didn’t happen often before I started sharing my story openly. The few people I shared with were closer to me and I decided to tell them only after I trusted them. But now that I’m sharing with more people, I don’t get  to control who has this information, and I find myself in situations like one from last week:

I was invited to an event that I didn’t feel comfortable going to. When I expressed this and told the person that I would normally go but I feel like it’s too big of a risk right now, this was not an acceptable answer to them, so they kept probing. I had to spend a lot of time explaining every little detail about how my OCD works in order to get them to accept that I would not be attending the event.

Even though I’ve been writing this blog for over 4 years, I still felt overwhelmed when asked to justify why my OCD was preventing me from going to this particular event. When I was bombarded by question after question - most of them comparing this event to other things I have gone to in the past in different circumstances - I felt like I was sinking in quicksand. I couldn’t come up with a response that made anyone happy, and I certainly wasn’t expressing myself clearly or well.

I tried to avoid this. I even wrote out reasons why I couldn’t go, since I tend to be better with writing than speaking, and sent it in an email. But I couldn’t avoid the combination of curiosity about why my brain works this way and pressure to wear me down. I’m pretty sure people were hoping that I would get tired enough of answering questions, cave, and go to the event.

I’ve encountered this before - people trying to stress me out enough that I will appease just to get out of the pressure of the current situation - but I absolutely despise it. I can’t understand why people think it’s okay to take advantage of knowing something about someone (like that they get anxious when confronted with this sort of thing) and use it to get what they want. It’s manipulative and frankly mean, and when I am pressured like this, I am often reduced to tears before either giving in or standing strong.

In this particular situation, I stayed strong. But I have absolutely been manipulated in the past when people have information about me and use it in unsavory ways - like my first boyfriend, who I confided that I was self-conscious about being “normal,” and he used this information to coerce and manipulate me into taking steps forward in the relationship that I did not want.

Thankfully, this example with the event is far less insidious, but there’s still that same mentality of not accepting a “no” and trying to turn it into a “yes” by whatever means necessary. There’s still the same knowledge that I would rather give in than engage in a conflict, and that I tend to try to protect myself from situations that make me anxious.

Not to mention, asking why my OCD manifests in a certain way is not only a question I can’t answer, but also a question that makes me feel inadequate, as if I’m doing something wrong by not having OCD in the way someone else expects me to. It makes me feel like some kind of zoo exhibit or freakshow, like I’m a different species that’s extremely hard to comprehend. And this feeling only feeds into a recurring negative thought that no matter how hard I work, I can never be a “normal” person.

I choose what to share carefully, and in different settings I may be comfortable with more or less. I’m going to tell a close friend more than a coworker or casual acquaintance. That is my right and no one is entitled to information that I do not want to share. I am also not bound by anyone’s ideas of if I am not trying hard enough or not doing the things they want me to do. Even if I have chosen to share some information, my life and my choices still belong to me.

Long story short, sharing one thing does not make me have to share everything - and in all situations, the word “no” needs to be respected.

 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.

Conflicting Desires

Conflicting Desires

I was very surprised at my reaction to receiving my itinerary for my upcoming dream trip to New Zealand: instead of purely excited, I was a strange mix of excited and very nervous.

All of a sudden, I was worrying about things I hadn’t even considered before: I would be 18 time zones away from everyone I know; I would throw my routine completely out the window; I would try a lot of new things; I wouldn’t be 100% sure what would be safe for me to eat.

In my frenzy to book the trip ten months ago, I ignored all of this as soon as I saw the places I’d be able to visit. I was beyond thrilled about going to all the sites from the Lord of the Rings trilogy, and I completely ignored the practical parts like the sixteen-plus hour flight, exploring a new country by myself before the tour begins, and the complications of figuring out an international trip in the first place.

I told my therapist that I was surprised I wasn’t feeling pure excitement about seeing the places I’d dreamed about. She, on the other hand, wasn’t surprised.

She told me that I’m very focused on my routine and the nitty-gritty of how things work, and she said it’s not surprising that I would get overwhelmed by planning so many details with so many things unsure or left to chance. She told me I could use coping mechanisms like I do for other times when I get overwhelmed, like dividing things into tiny tasks and feeling calmer as I accomplish them one by one.

My therapist helped me feel better about the tasks I had yet to do and helped me organize them in my head - and I was so glad she didn’t tell me to just stop thinking obsessively about the trip.

Anytime I’ve ever been told “stop obsessing,” it’s like telling someone to not push a big red button that says PUSH ME. It just makes me do it more, in other words - so what I’ve learned over the years is that I have to redirect the obsessive thoughts instead of stopping them, and wait for them to stop on their own.

Ironically, what helped me get out of this instance of a negative obsessive mindset was getting into a positive one.

I found an excursion to go to the Ford of Bruinen and Lothlorien - the two places that meant the most to me when I watched the movies for the first time and still hold a special place in my heart twenty years later.

I first watched the scene at the Ford of Bruinen when Dad was trying to convince me that Lord of the Rings - and by extension, other works of fantasy and science fiction - were not just for boys.

“Look, here’s a girl elf being amazing,” he said, and my entire love of fantasy bloomed in that one moment. It might sound cliche, but it’s true! I’ve always wanted to wear my elf dress in the place where that happened, and as soon as I found out I’d be going there, I felt that same childlike sense of wonder from when I first watched the movies.

And then there’s Lothlorien, which I used to dream of visiting when my head was in turmoil since it was such a peaceful place where everything was always safe. I used to have dreams where I wandered there for hours on end, only to be upset when I woke up. And I get to go there in real life!

Pivoting from negative obsessive thought patterns to positive ones is not always doable, but I always appreciate when it is. It proves to me that my brain isn’t incompatible with positivity - I just have to get there in a different way sometimes, and that’s completely okay.

 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.

Thirty

 Thirty

This week, I’m celebrating my 30th birthday - something that seemed unattainable or impossible at certain times in my life, but I’m very glad to report that I’m still here, still fighting, and excited to see what the future will bring.

I’ve been in a reflective mood this week anticipating such a big birthday, and I keep returning to this: One thing I’ve learned throughout my life is that my friends and I who live with mental health conditions struggle with self-love. We may take care of ourselves, but in the face of a world still plagued by stigma, it can be hard to actually love what may not be as socially acceptable about us.

I’m starting my 30th year off right in the self-love department as it’s almost time for my dream trip to New Zealand, which will celebrate my positive obsession with Lord of the Rings.

But I also wanted to take some time to really think about acknowledging the things that aren’t as easy to appreciate - the things that have limited me in the past that I have been working on and will continue to work on throughout my life.

With that in mind, here’s a list of 30 things I appreciate about my OCD journey in anticipation of my birthday. It may not be perfect, but these milestones have meant so much to me as I’ve worked hard to live a good life.

1. I’m thankful for my ability to turn my emotions and experiences into stories I genuinely love writing.

2. I’m thankful for the “what if”s that inspire fantasy and science fiction stories instead of all the things that could go wrong in the real world.

3. I’m thankful that I can cherish my small but close-knit group of friends instead of always wanting more.

4. I’m thankful for the ability to support my friends in mental health crises because I have needed such support myself - and the way this helps us form deeper bonds.

5. I’m thankful for macaroni and cheese, orange juice, and my favorite food, baked ziti - just a few of the foods I eat now that I never would have touched as a child.

6. I’m thankful for the people who are kind to me about my food aversions and other OCD symptoms I still show, and my thicker skin with people who aren’t as kind.

7. I’m thankful that I can do “life skills” like holding down a steady job, paying rent, and organizing a social life - which mean so much more when I never knew if I was capable of achieving them.

8. I’m thankful for the strength to advocate for myself and what I need, and to help others do the same.

9. I’m thankful for the fact that my limited experiences during childhood means that there are so many new and wonderful things to discover as an adult - and I no longer hold myself to any timetable of doing these things.

10. I’m thankful for my ability to stop the “runaway train” thoughts I had as a kid and process things in the way I need, at my own pace.

11. I’m thankful for how satisfying it feels to accomplish something I’m afraid of, whether it’s a one-time occurrence or a new part of my life.

12. I’m thankful that I can put my organizational skills to work to make stressful life events that I anticipate as smooth as possible.

13. I’m thankful that I’ve been cultivating independence ever since I moved so far away for college, and continue to rely on myself for a variety of new moves and fresh starts.

14. I’m thankful that I’ve learned how to seek resources for things I need to learn, and the fact that I’m always working to make things better for myself even in the smallest ways.

15. I’m thankful that I can take personality traits that come from OCD, including perfectionism, and use them to make my daily life easier instead of harder.

16. I’m thankful for the medication that helps me survive and thrive - and that I am no longer ashamed of needing.

17. I’m thankful that I can live a happy life after medical trauma due to putting in an immense amount of work that I never could have imagined actually working.

18. I’m thankful that my mental health is now strong enough that I can talk about these and other experiences without flashbacks, panic attacks, or other physical symptoms that stopped me from enjoying life.

19. I’m thankful that I was able to graduate college on time after two separate crises - one physical, one mental - that I wasn’t sure I would be able to conquer.

20. I’m thankful that I now see myself as a fighter, as someone strong instead of weak for having gone through experiences like this.

21. I’m thankful for the fact that I can hug dogs on the street after so many years of being afraid of dogs.

22. I’m thankful that, even though I was afraid, I still took the leap of letting a dog into my life, loved him for all the years he was here, and sought counseling when he passed away.

23. I’m thankful for the fact that I continue to seek help in therapy even after wanting to be “done” when I was a teenager - and recognize that learning about one’s own mind is a lifelong journey.

24. I’m thankful for my ability to set new goals for myself and believe that I can do them, no matter how difficult I find them.

25. I’m thankful for days without panic attacks, obsessive worries about throwing up, and all sorts of other negative thoughts I’ve learned to conquer.

26. I’m thankful I can enjoy endless happiness from my positive obsessions and cultivate this joy through fandom conventions, fan fiction, and more.

27. I’m thankful for the Lord of the Rings trilogy, which brings me so much pleasure during good times and inspires me to keep pushing during hard times.

28. I’m thankful that I am willing to admit when I did not succeed at something or need more help, even if it’s something I had been looking forward to for a very long time or trying extremely hard to do.

29. I’m thankful for the courage to try again with things I’ve failed before, including the fact that I’m willing to go to New Zealand by myself after some unpleasant international trips in the past.

30. Most of all, I’m thankful for and proud of the fact that I am now confident enough in who I am to share these facts with others. I love the thought that I’m helping people feel more comfortable with themselves and working towards destigmatizing 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.