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The Thoughts That Fill My Head as Someone With OCD

“OK, it’s 10:16 and there is 1.3 km on my tripometer. It should take about 35 minutes to go 5.3 km…

“Dance for me, dance for me, dance for me, oh oh oh. I’ve never seen anybody do the—”

Red light… 60 seconds… only 15 for the “walk” signal…

Gotta remember to pick up mushrooms on the way back… so I need mushrooms, oranges, hummus, agave syrup….

“Dance for me, dance for me, dance for me…” — ugh, that silly song!

My turn to cross. 15 seconds. 1… 2… 3… 4… 5 —

Oh, I also need bread. So that’s mushrooms, oranges, hummus, agave, bread… I wrote a list on my phone, but it doesn’t have bread… hope I don’t forget… Bread, bread, bread, don’t forget bread. Bread, bread, bread, don’t forget bread. Mushrooms oranges, hummus, agave, BREAD. Mushrooms, oranges, hummus, agave, BREAD…

Eww! That guy just spit on the sidewalk. Ech!… (thinking about spit)…Don’t think about it… (thinking about his spit on me)… Don’t think about it… (thinking about his spit in my mouth)… Oh, GAWD! (gagging) What is WRONG with you!… (gagging)… Think of something else!…1…2…4…8…16…32…64…128…256–

“Dance for me, dance for me, dance for me, oh oh oh—” OMG! That song has been in my head for almost a week now! Think of a new one…

“Take me to church. I’ll worship like a dog at the shrine of your lies. I’ll tell you my sins, so you can sharpen your knives. Offer me—”

Need to stop at 7-Eleven for smokes… two packs Pall Mall Smooth King… May I have two packages of Pall Mall Smooth King please?… May I have two packages of Pall Mall Smooth King please?….  May I have two packages of Pall Mall Smooth King please? —

Ack, siren! Yikes, that’s loud! The world is so NOISY…. The world is SO noisy. The world IS so noisy. The WORLD is so noisy…. Noooiiissyyy… n-o-i-s-e-y… Wait…n-o-i-s-y?…e-y? … No, I think it’s just y…I’ll have to look it up…

“Take me to church. I’ll worship like a dog — Dance for me, dance for me, dance for me, oh oh oh….” Oh no! Stop. Stop, already!”

This is a brief sample of what is happening in my mind as I travel in my power wheelchair to the skytrain station. Now imagine this sort of internal dialogue happening many times a day, filling the space inside your head with a jumble of unnecessary and distracting data, leaving you mentally fatigued and emotionally agitated. This is what living with obsessive compulsive disorder (OCD) is like for me. Any time I am not occupied with an activity or task that I can focus on, it’s like my mind is compelled to fill the empty space with something, anything, no matter how weird, irritating, unnecessary or disturbing it is to me. And I often feel completely powerless in controlling it.

For many people, when they think of OCD, it conjures images of obsessive hand washing, turning doorknobs a set number of times, repeatedly checking stove dials, avoiding sidewalk cracks, etc. But for some people with OCD, it’s “all in their head” — literally. Excessive list making, repeating words and phrases, counting, mentally arranging and organizing, nonsensical noises and words, intrusive and uncharacteristic thoughts… These are all OCD behaviors that are invisible for observers but are equally as unhealthy, disruptive and disturbing as the visible compulsions.

Re-reading what I have written just now fills me with embarrassment, and makes me want to go back and re-write it so it sounds less “crazy.” Yet, it also feels cathartic and relieving to get it out and on paper. I know I can’t be the only person who lives like this, and it brings me comfort to know that telling my story might help someone else feel a little less “crazy.”

I deliberately use this term in quotes because I sometimes feel like I’ve lost control of my thoughts, and in danger of losing control of my mind. When I was a child, my mother (who also has OCD) used to call her compulsions “the crazies” because none of us really understood what they were at the time. When I began to show small signs of them, we joked about how I “inherited Mom’s ‘crazies.'” But they seemed to be harmless quirks, so we all took them pretty lightly… until it wasn’t funny anymore, until it really began to seriously impact my mother’s quality of life. And mine.

What is fortunate about this, however, is that I’ve never really been alone in my struggles. By the time my OCD began to impact my mental health, Mom had already been diagnosed and done a lot of research and personal growth. When I began sharing with her my “crazy” thoughts, she understood exactly what I was going through. She told me about other family members who had OCD, talked about what she had discovered about herself and shared tools she learned to combat her own compulsions. It’s a relief to know that I’m not weird, or evil, or broken, and that my loved ones understand. But that doesn’t make it less embarrassing, isolating and difficult to talk about.

What happens inside your head is supposed to be private and safe, right? As long as we don’t speak or act on evil thoughts, we are still good people, aren’t we? Being able to organize our thoughts, focus our minds and think clearly is valued in our society and considered a mark of intelligence. So, how do I talk about the bizarre and uncharacteristic thoughts that suddenly pop into my head, making me recoil in self-disgust? How do I admit that I didn’t hear the next question you asked because I repeated the answer to the first question five more times inside my head for no logical reason? How do I explain why I still count down the seconds at a specific traffic light even though I know it takes 60 seconds to change, and 15 seconds for the walk signal? It’s difficult to translate into coherent sentences what happens inside the ethereal, formless, vast and often incoherent universe that is my mind. And to do so without feeling like a “weirdo” /”freak”/”lunatic” is almost impossible. If a private thought can make my cheeks burn with shame, imagine sharing that thought out loud!

Ten years ago, I developed brainstem encephalitis and was bed-confined and hospitalized for 18 months. There was a period of time when I was paralyzed, vision-impaired and unable to speak, and in an effort to remain sane, I spent a great deal of time entertaining and occupying myself inside my head. The OCD worsened as a result. I’m almost certain it was because of the utter lack of control and autonomy I felt. My body was so ill that, quite literally, the only thing I had control over was my mind. Arranging, organizing, listing, debating and creating inside my head was a way to feel like I had some control while I lie alone and motionless in my narrow bed.

Constantly occupying my mind was an incredibly useful (and even healthy) tool for coping at the time. But now, with the crisis long over, it has evolved into an obsession rather than a tool, and more of a hindrance than a comfort. Over the years, I have learned ways of coping with and combating these frequent moments of mental aerobatics. Amidst the current pandemic, however, I’m finding it more difficult, and the random intrusive (often fear-based) thoughts are becoming gateways to downward spiraling lists of various potential disasters, health issues and traumas I might encounter.

I know it’s time to see a therapist. I’ve been to therapy many times for other mental illnesses, but never for OCD. I never considered it to be a big enough issue; just something I had to learn to tolerate (like the chronic pain). But I’ve lived with mental illness long enough, and been to therapy enough times, that I know when it’s time to seek help. That means, however, I have to talk about it. I have to let a stranger see inside my “crazy” head, and then I have to talk about how I feel. Ordinarily, I am very good at explaining my experiences and emotions, and open to discussing them. But I’m not comfortable sharing these though processes that I barely understand myself.

There’s a greater fear behind this as well. These “crazy” thought interludes have served me very well at times, and continue to do so. Some of my most creative projects have come from these moments. Some of my most profound writing has been borne from them. I have solved personal mysteries, uncovered hidden truths and discovered new perceptions as a result of them. And they have brought me comfort and calm at times when I most needed it. So, I don’t want them to stop. I wish there was an internal dial on them, that I could dial down when I feel like I’m losing control. (It’s interesting that needing to feel more “in control” is likely the reason why it happens, but the more it happens, the less “in control” I feel…)

So, here I am, at the crossroads of knowing I need help, but being afraid of seeking that help. Wanting to address the issue, but enjoying the benefits of it. Needing to talk about the pain it’s causing, but fearful of the outcome of that work. I also know that if I don’t address it, it will likely worsen the depression and PTSD that I have managed to stabilize. I know better than to assume it will resolve itself on its own, or that it will subside after the pandemic. Mental illnesses generally don’t work that way. But knowing what needs to be done and actually doing it are two very different things…

Getty image via Ponomariova_Maria