Hurting to Help

Hurting To Help

This week, I finished my eleventh National Novel Writing Month - but this wasn’t like my usual NaNoWriMo experience.

This November, instead of writing a fantasy or science fiction novel like I usually prefer to read, I instead wrote the second draft of a memoir designed to educate people without OCD about what it’s really like - and help others who do have it to feel like they’re not alone.

To that point, the presence or lack of people who understand takes over a lot of the content. While writing, I had to remind myself that times are different now, I do have friends, and I am no longer the little girl who felt so lonely being the only person I knew with a mental health diagnosis.

I didn’t have the luxury of friends until I was much older, but when I was little, I wanted someone - anyone - to tell me that they also had something and their life was good, so mine was going to be good too. I designed the memoir to do that for others who might not know anyone else, who might find a friend in the book when they would otherwise not feel understood by anyone.

The tricky part was, I wanted to be as brutally honest as possible. I wanted to show the highs and lows in such vivid detail that people without mental illness would get a taste of what it feels like, and what some people go through every day.

Two problems quickly came up due to this approach: First, there is a lot of my own life that I don’t remember thanks to trauma, that I had to reach out to my family to ask about. It felt strange to be asking someone else about my own life, and yet I didn’t expect anything different. My psychiatrist told me a long time ago that the reason I was forgetting things like that was because of trauma, but it still bothers me that I feel like I’ve lost a part of my life to my head that I can’t get back, even by asking others. I can get their perspectives, but I can’t remember what I was thinking or feeling during these pivotal moments, which makes me feel like I’m missing something.

Additionally, I faced the problem of having to face that trauma head-on, especially in the case of my blood clot nearly ten years ago as well as the nervous breakdown two years after. I had written about both of these events before, but never in such explicit detail. In one of the essays in the memoir, I detail every single obsessive thought I had while I thought I was going to die in the hospital, from my fear of throwing up to my intense sadness of dying alone.

In order to make these essays as accurate as possible, I used the opposite of a therapeutic technique called “grounding.” Normally, people use grounding to remind themselves that they are in the real world and not in the middle of a traumatic incident, but I was using it in the reverse. I used the principles of grounding, including filling my head with sensory details, to make myself feel like I was there again. Although the writing turned out great, this greatly affected my mental health.

I’m so relieved to be done with this round of writing, and eager to hopefully share this book with the world sometime soon. In the meantime, I’m going to not think about the project for at least a month, to give myself time to heal. I was definitely hurting myself in the interest of helping others one day, and although I do agree with that principle, it was definitely too much all at once.

Even so, there was one positive side effect of writing about all these traumatic times: I was able to see how far I’ve come since I was first diagnosed, how I am able to live a successful life with a job and friends and financial independence, and that encourages me to keep fighting to improve life even more for myself and others living with mental illness.

Ellie, 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.

Dungeons & Dissociation

Dungeons & Dissociation

It’s rare that I experience something new related to my mental health, especially since I’ve been living with OCD for a full quarter-century and PTSD for nearly a decade. But last week during my Dungeons & Dragons session, I found myself experiencing a symptom of PTSD that I had never felt before.

I was sitting at the table with my friends, just like every week, when the DM told me that he wanted to turn off the lights, and I should pick a scented candle to illuminate the space. I picked a peach one and he set it in the center of the table, then explained that my character was going to have a dream scene.

This isn’t unusual in our campaign - multiple characters have either prophetic or interactive dreams - but I knew this one was different as soon as the DM leaned over the flame and started to yell at me that I’d done something wrong.

Instantly, I felt defensive. The DM was role-playing as a powerful devil, which I knew, but even so, I felt highly uncomfortable. He was up in my space, yelling, stern, scolding me for something that I had to do in order to keep the party together. Nothing I said seemed to make a dent in his anger, even though my character has very high levels of charisma and that usually works. He then had me roll a die to see if he could be persuaded, but I needed to roll an 18 or above on a 20-sided die to even have a chance.

I rolled a 10, and he explained that my character faced horrible pain before waking up transformed into a hideous creature.

As he detailed the changes, a strange feeling came over me. I felt like I had the urge to panic, but it was almost as if it was locked behind a glass wall. I could see it, but I couldn’t access it - or any other emotion. I just blankly stared ahead, feeling like my brain had left my body entirely and was just off on its own somewhere. This was extremely scary, but I couldn’t quite feel the fear - that was locked away too.

It didn’t take long for the DM to notice that something was wrong. He asked me if I needed a break, and I nodded, then finally spoke - asking him to turn the lights back on.

When the lights came back on, I felt like my brain came back to my body. The feelings of panic and upset returned in full force and I started to cry.

The DM said that we were going to stop playing for the night and just process this. I was afraid and ashamed - I don’t like to be mentally weak in front of my friends, in case they decide that I’m not worth being friends with if I’m too complicated - but I couldn’t hide it any longer.

I told him that I had been triggered by several of the things that happened in the conversation with the devil. The darkness and firelight accentuated the fact that he was looming over me, angry. I felt helpless not only in the encounter, but in determining the fate of my character. I felt like I couldn’t consent to what was happening, I had no agency as a player or as a character, and I started to spiral in a strange way I’ve never encountered before.

When I told my therapist about this, she told me that I had dissociated. This is an out-of-body experience when reliving certain types of trauma or experiencing too many triggering things at once. I came to realize that many of the physical changes the DM gave to my character were things that were directly tied to my medical trauma and also to the way I had been writing about childhood experiences recently, back when I thought that my OCD made me akin to a monster.

I reached out to the DM, who was deeply apologetic, and we spent hours talking through what would be the best way to undo the damage that had been done both in and out of the game. I was able to choose what changes I was okay with physically, as well as start my character on a new path to get out of the deal with this devil altogether. He also assured me that any further interactions would take place in normal lighting with no looming or yelling.

Even though I was ashamed of dissociating, I was so glad that I have finally found people who I could tell something like this to and they would want to help instead of run as fast as possible in the opposite direction. The whole group rallied around me and I felt incredibly supported.

My therapist described this as a “corrective experience” - I experienced a situation that was like something before (displaying mental illness openly around friends) but instead of being rejected, I was accepted for being exactly who I am, brain and all. This response enabled me to feel powerful both in and out of character and I believe my D&D campaign will continue to be the wonderful experience it has been for the last two years.

Ellie, 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.

Things I Can’t Quite Explain

Things I Can’t Quite Explain

After nearly two years of blogging, I’ve been able to explain most of the things going on in my head in a way that I hope is accessible to readers. However, there are still some things I find difficult to understand, let alone explain to someone else.

A few of these things have cropped up as my musical-writing team is working on edits. Writing a character with OCD in a fantasy universe has been fun but difficult, especially since there have been a lot of misconceptions to clear up.

One of these things, which I have experienced but don’t fully understand, popped up in the script the other day. As I edited it, I remembered all the moments I leaped into conversations in the middle of other people’s thoughts or sentences, so excited to get the words out that I could barely talk.

I remember having this feeling a lot when I was a child. When I had a thought I wanted to share, no matter how inconsequential it might have seemed to the overall conversation, I felt deeply desperate to share it. It wasn’t an obsession, but it almost felt like a volcano boiling inside of me, ready to explode unless I set it free myself. Over time, I learned to douse this inner fire, although in some circumstances - usually related to my deepest passions - I still feel the need to interject.

I don’t have any particular obsessive thoughts or compulsions about this. It comes on suddenly just like an obsession, but I don’t think anything bad will happen if I don’t say the thing. Instead, it feels like I have the perfect response for the conversation, something that will make me sound smart and desirable as a conversation partner, and in the moment, it is inexplicably urgent.

Another challenge of editing has been the need I feel to correct all spelling and grammar mistakes I see. Once again, it’s not like I think someone I love will get hurt if I don’t edit things correctly, like I thought in my childhood about a variety of daily tasks. But, just like if I know that my dollar bills don’t face the same way in my wallet, the thought occupies my mind, and I unintentionally tune out everything else until I can fix it.

This presented a problem during my senior year of college, where I took a class in the writers who inspired Shakespeare. Many of the class texts were written in Old or Middle English, and I had such a problem with the unusual shapes of letters and spelling of words that I couldn’t understand what I was reading. It was the first time I ever had problems with reading, and no matter how hard I tried to convince myself that it was something I needed to overlook, I couldn’t.

This problem bothers me more, as it seems like a link to the stereotype that all people with OCD have alphabetized bookshelves and arrange everything so neatly that things fit together perfectly. It reminds me of the online compilations of “pictures that will make your OCD happy” that depict objects lined up in a row or matching or somehow being organized. It bothers me that I fit the stereotype in this way, although all the negative sensation I feel from not editing things well is a general sense of malaise. With enough effort, I can ignore it and come back to it at a better time, and at work, I am often praised for finding typos that elude others’ eyes.

This week, as I edited the first complete version of the script, I came across something else that has escaped my understanding for a long time. The character with OCD, the one who I was so excited to see in a fantasy universe, was not supposed to be a loner, and yet everyone who wrote her wrote parts where she was completely alone emotionally. She didn’t just talk over people or have specific things she felt the need to do; she did all of these things alone and isolated herself from everyone, even when it was supposed to be a completely different character who was lonely.

Reading that hit home. It felt all too real. How many times had I “messed up” by showing my obsessions, compulsions, anxieties, and fears to others throughout my life, only to find myself alone? Thankfully, now, I feel like I have a loving and compassionate community of friends, but it’s taken me until my late 20s to feel this way, like many of my friends felt in elementary or middle school.

I have a theory that I was too busy fighting things in my head to be able to make deep friendships, but at the same time, I don’t know for sure if that’s accurate. Is there a component of loneliness to OCD? A component of too much introspection? A component that made me laugh at a Tumblr post showing some of my favorite characters living with mental illness captioned “‘Wow, you’re an old soul’ is a polite way of saying ‘wow, you’re only 12 and you’ve already used up all your serotonin’”?

In the end, I reached out to the musical project leader. I explained that even though I don’t know why certain behaviors happen, they’re not all that matters in the life of a person with OCD. And we went through the script together, line by line, not looking for typos but for ways to really, truly make this character a part of our world.

And when I heard the project leader’s first draft of this character’s song, I cried. It somehow took all these things I didn’t understand and made them feel right, almost as if this character was real and sitting next to me. As if I was speaking to someone else who also couldn’t articulate every nuance of their lived experience, but we matched, and we belong in the worlds we’re in.

Ellie, 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.

Gotcha Day

Gotcha Day

Many people who adopt dogs honor the dog’s “gotcha day,” or the day the dog came home. This week, I experienced a different kind of “gotcha day” - in a perfect world, I would be celebrating a year with my first-ever puppy, Ella. Instead, I recall a time when my OCD trapped me, said “gotcha,” and prevented me from being able to take care of the puppy I loved so much.

Even after a year, I still blame myself for what happened. I know it doesn’t make sense. I know that even when I hear a puppy whining in the park it sends me back into unpleasant memories. I know how much I value my sanity and that I wouldn’t give it up for anything. But at the same time, I still struggle with feelings of inadequacy about what happened.

I often think that someone neurotypical - someone “normal” - could have taken care of a puppy with high anxiety and some physical problems. I picture this “normal” person as calm, rational, able to be the adult in the situation and realize that they have things under control.

Instead, I’m stuck with my memories of not being able to turn my head away from Ella, in case she peed or pooped on the floor. Never mind that she was almost completely potty pad-trained by the time I had to return her to the breeder. Never mind that an accident produced by a 3-pound puppy took a couple of minutes to clean up. None of that seemed to matter when my brain was revving and demanding that I do nothing but watch this tiny puppy in case she had to go to the bathroom.

I know that a lot of the problems with our situation were not caused by me, but they were exacerbated by me. I wasn’t the one throwing tantrums for hours on end, but I was the one crying at the tantrums and probably making them worse. I wasn’t the one demanding 24/7 attention, but I was playing into that need of Ella’s by not being able to turn my head away. I wasn’t the one who didn’t know how to walk or sniff grass or do anything any dog I’ve ever met is able to do, but I was the one who couldn’t make myself eat or sleep or function in any way until I reached a crisis point in only nine days.

I was so desperate to get her out of my house that when I asked the breeder to return her on a Saturday and she said she was only available on Sunday, I begged her to reconsider. And yet, I missed Ella as soon as I put her in the breeder’s arms, the same arms I had taken her from not even two weeks prior. I think of her, not often enough to disrupt my life, but when I hug a Frenchie on the street or see dogs parading around in Halloween costumes, I think of her.

I wonder what her name is. I wonder if someone helped her with her anxiety, and if she’s doing as well as I am. I hope she’s not scarred from the experience, and yet, I hope she remembers me. I have a fantasy I know will never come true, of somehow running into her on the street and recognizing each other and being able to have closure.

One year on, I think the best closure I can get is mental. I need to believe that Ella, no matter what her new owners call her, is doing well, and that I didn’t mess her up or ruin her life. I know for a fact that my life is much improved mentally, socially, and financially, even if it meant giving up the little warm puppy falling asleep on my shoulder and snoring far louder than her tiny lungs should have been able to.

When I told my therapist that Ella’s “gotcha day” was coming up, she asked me how I was feeling. I answered honestly - a weird mix of relief, shame, and sadness. Some weird kind of grief for a life I could have had, if only I was different. But instead of my other fantasies, this one was real for nine days, and I experienced both the good and the bad.

She reminded me of my friend who was recently in a similar situation, returning a dog after 3 days. She asked me what I told him, how I consoled him when he cried into the dog’s fur just like when I cried telling Ella I was going to send her to another home.

And just as I remembered Ella licking my tears - the last photo we have together - I remember what I told my friend. That he gave dog ownership a good, honest try. That it didn’t guarantee failure in the future. That he might be better at it if he was working with someone else instead of trying it alone. That he would find a way to have a dog someday where he and the dog were both healthy, and that was more important than embarrassment or shame.

As I spoke, I understood why my therapist made me recall this conversation - I am much kinder to others than myself, and have a big problem forgiving myself for failing to do something I really want to do because of my mental health. I do know others who have had to return pets, and it doesn’t make them bad people or slaves to their mental illness or any number of unpleasant things I called myself when the feelings were still fresh.

It’s been a strange week. I’m doing my best to be kind to myself, to go out with friends and have fun and remember that these are things I can do because I have a good handle on my mental health. I went to the park earlier today and hugged half a dozen dogs and allowed myself to imagine my future success with dog ownership instead of harping on my failure.

I don’t think I’ll have complete closure with this situation until I am able to have another dog. Until then, I think there’s going to be a small part of me that doesn’t believe I can do it, that doubts my character and strength. But one day, I know that I’ll be dressing up another dog in a Halloween costume, and somewhere out there, Ella is doing the same thing.

We might not be reunited at any point to celebrate Halloween or “gotcha day” together, but in the end, we both got what we needed: a good home for her, and a way to work on issues I’d shoved under the rug since I was a teenager with a good therapist and a more mature outlook.

Ellie, 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.

Like Everyone Else

Like Everyone Else

This past weekend, I had a very unusual experience that I tend to assume is normal for most people - I didn’t eat a single snack I packed for a family celebration, only ate what was provided.

Although this might not sound like a milestone, it’s something that I’ve never accomplished in my 28 years of life. And while I joke around that I eat like an overgrown toddler, the truth is that I’m very sensitive about my lack of “normal” eating habits and often get ashamed when people question me about why I won’t eat certain things that the majority of people do.

After so many years of therapy and medicine, I am proud of the fact that I can go through life “passing” as neurotypical. If I meet someone new, their first impression of me is not likely to be colored by the fact that I live with mental illness, and when I share this information with people I become more comfortable with, they are often surprised because I - for lack of a better phrase - seem to have my shit together.

But if someone’s first impression of me is at a restaurant where I’m not comfortable, things seem completely different. I’m anxious and fidgety. I read the menu over and over, almost as if seeing the words again will magically make them change into something I’m comfortable with. I watch the waiter move around the table taking orders with the same look on my face as if I was expecting to be served as the main course.

And then, I order “weird.” I don’t order something on the menu at all, or I order something like an appetizer that’s already pushing my limits but still get the same stares as if I haven’t ordered anything at all. I end up feeling like no matter how hard I try to blend in, I am conspicuous in my eating habits, and no amount of praying or hoping or discouraging can keep some people from interrogating me about why I eat the way I do and humiliating me in front of groups of people.

Even though my immediate family has long been accustomed to my eating habits being strange thanks to a lingering remnant of OCD that I don’t seem able to master no matter how hard I try, my extended family is not nearly so understanding. And although they don’t have to be, I still end up with a sinking feeling in my stomach when it comes to extended family events where I usually have to bring my own food and sneak away until I find an inconspicuous place to hide and eat. It’s not conducive to bonding with my family, as my thoughts and often my actual body are in different places from everyone - but it’s something I’ve learned to accept as inevitable.

As such, I was unprepared for a bar mitzvah I attended this past weekend to not only have food I would eat, but a variety of it. I didn’t have to be hungry at any point in the weekend, nor did I have to scavenge for snacks instead of sitting with everyone and enjoying the event to its fullest. After all, a 3-hour dinner doesn’t feel nearly as interminable when I am eating food like everyone else instead of dodging questions about pickiness and allergies.

It might seem like a small thing, but being able to eat what everyone else was eating - and eat together with them - helped me enjoy this event so much more than many others in the past. I was able to get out of my head and be fully present and participatory, which led to some great conversations with  my aunts, uncles, and cousins. It was so much more enjoyable than I’d anticipated, all for this one simple reason that probably wasn’t even a consideration in terms of planning the event itself.

All this to say, feeling included is a huge part of feeling welcome in a particular space. It was a blessing for me to feel like part of something I don’t usually get to participate in and set aside my feelings of inadequacy for a carefree, fun time. If there’s ever a way that you can consider someone like me in your event planning, even if it seems like something small, it might mean the world to that person.

Ellie, 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.