Writing (and not writing) with OCD
A lot of writing about not writing…
I don’t talk about my OCD a lot, but I think anyone who has read either my books or my blogs have seen it come up, either in real time, or mentioned in ways that don’t quite come out and say OCD, but is recognizable as such. I got in the habit of not talking about my OCD just before my teens when it really started showing up, partially because I was already a wary young person, and I knew what fucking crazy looked like. I knew what happened to undesirable children after being through the foster system. And although I didn’t have a full grasp of what paranoia was, I also had a lot of that showing up as my OCD did.
Mental illness is both the most natural thing in the world, and also the thing you feel like you can’t share when you need to fit into a society to survive. Everyone else is so “normal”, because no one talks about it. No one mentions the hardships, the failures, the inability to keep up with the Jones while everyone looks like they’re keeping up with the Jones. Until you start to realize: it’s not the failures that are so shameful to society, but the feelings around them. The admittance of it all. The people that hold the source.
As a kid, I picked up on it — how can you not, when you need to be perfect to prevent ending up in the worst situation, depending on total strangers for your very survival? You have to adapt to everything as it comes, because battling reality in those moments could leave you without support, adrift, and soon dead. So I adapted to mental illness, and took care of my adoptive mother as her cancer resurfaced, and tried to ignore just what was happening in my head while living in a moldy basement, with untreated PTSD, untreated OCD, untreated depression, untreated anxiety, untreated allergies… trying to be perfect for others in the hopes it would better my life.
It did not. My parents passed away (as many do) and I was left with a lot of untreateds and no life skills in how to:
1) look at these issues
2) seek out help
3) have bodily autonomy when negotiating with mental health professionals.
Because young people — especially traumatized ones — are trained that an adult will always make the decisions, and they will always be followed even when they are not the right decision. Because mental health was not a topic of conversation in my family, the final rights to one’s body, one’s safety, and one’s mind when asking for help also wasn’t explained, and that was a disservice, one that is perpetuated in many households every day.
Mental illness is not an excuse for someone to take away your rights, or to make you feel like you’re undeserving of participating in your care, no matter how it’s stigmatized and disliked. That people hide their struggles with mental illness isn’t just from the social isolation that comes when society decides you’re not “of use”, but because there is a long history of dehumanizing those who have mental illness. Of rationalizing the physical removal and all levels of abuse on human beings because of mental illness. Because of emotionality in general, which is how an entire sex was punished when they might dare to seek financial and bodily autonomy — how many generations did we refuse females money so that men would have wives? But I digress…
When I write about the characters in the Paranormal Academy for Troubled Boys, and their problems seem so strange and unrelatable with the fantasy elements and such, I’m really writing a place where it’s okay to have mental illness and still be free to be oneself. Even when not free. Finding a balance in a good place that doesn’t ask you to hate the parts of yourself you’re battling, instead of the world trying to either shut you off — the good and the bad — to make you controllable and acceptable by their standards, or to just throw you away in exile. These were the only options I saw available to me as a traumatized youth. Conform or be exiled from the tribe.
A pattern of thought
I like to think of my OCD as having triggers, where I can say “If I can just get over my fears of ***, it won’t show up.” But OCD is a force under it all, a process deep in the nervous system even under those subconscious triggers, and it’s always there. It is my base wiring that will twist as it surfaces, such as in my editing, or any place where I’m suddenly focused in making something “correct”.
If I’m feeling fanciful, I describe OCD as a pattern inside me that I need to see repeated on my environment, and in all the things I do. All life has a pattern — life is a pattern of the inorganic into the organic. My version of life wants to change the external to suit my personal pattern, and when I do that, it makes me feels good and secure in the world. I see me, something familiar when before it was unfamiliar.
This pattern isn’t as distinct as something truly obvious — my counting games are mostly done these days — but it’s still the balance of objects, the balance of color and tone, balance of words and formatting, textures and flow. You see, anything and everything can hold this pattern, because hey, I adapt. This process of seeing something and wanting to craft my pattern to it is forever both a sense of satisfaction and contentment in the world, and a sense of dis-ease and misery. Because you can’t gain a completion of the pattern without the thing driving the compulsion — the horrendous underlying feeling that not having the pattern means you can’t be safe and happy in the world.
I like words. I like the concepts we place into words. I like codes — I read a book on making and breaking codes in my teens and it was such a fabulous time waster, so much more interesting than making mazes because of the nested levels of meaning that could be placed into symbols. The games that occupied my mind as I tried to distract from trauma and the difficulties of my brain… They were wonderful, because they helped me run away. But lately, now that I’ve gotten more of a handle on this immune thing, and am trying to build a life, these games aren’t a service to me, but a hindrance. The thing that I am, these aspects of myself, are preventing change at the moment, asking me to run away, to always be away from living my life.
It’s enjoyable, when not all consuming. Writing is one of these things, by the way. It’s not that OCD is only preventing me from writing by offering fun new things to learn or thinking of making interactive novels with a million endings, etc. OCD is also there when I’m writing, driving me to get these internal patterns out, translated, transformed, and understood so that a piece of my inner pattern has changed my external world in a satisfying way. Art is the same way — there isn’t a thing I do where it’s not there. I can’t load the dishwasher without some adherence or refusal to adhere to a pattern. This is a part of my makeup at every level.
It’s exhausting
I don’t actually know much about OCD. I have never sought a diagnosis, because in my paranoia, I knew the significance of what was wrong with me. I see patterns, including the patterns I put out into the world by interacting with it. Most people can’t figure out a simple puzzle, never mind know what they’re doing in ten minutes, and certainly don’t think down long roads of how their actions impact things. They’re not thinking at all, and what perfect bliss that must truly be. Because this thing in my head isn’t required for life; it’s just there anyways, observing, turning everything into the eye test from hell as it compares, measures, questions and twists every concept on end, trying to understand and inject meaning into things that are meaningless.
I see it as a step in human evolution, one very useful at times, but it’s poorly refined, hardly designer in nature. It’s the way my sharped-tooth brain works, hungry for data, for distraction, for conclusions to things that are chaos and don’t need organizing. It’s a pattern that demands a pattern be created in everything… so it can feel satisfied for the moment. Safe. Secure in a chaotic, unpredictable world.
But it doesn’t do it to feel safe. It does it because that is how I’m wired, and those good feelings are just that, chemical reinforcement to give in to the neurosis. Not actually a change of the world into something less chaotic and safe. Just a way my brain validates its behavior to be allowed to be exactly what it is: ravenous and with sharp teeth.
These teeth cut me more than they cut anyone else. Because PTSD is a part of my formation, human behavior became something my brain tears into to understand and then “solve” the pattern. And I would love to blame it all on trauma, some idea that a cure could be at hand, and this isn’t who I am cursed to be… but that’s a lie not worth telling myself. Because I’ve had to live with my brain my entire life, and I have to live with it going forward, and such lies don’t help anything.
I know it doesn’t always look like this…
My partner has OCD, was treated as a young teen. His brain is something he has to wrangle with as well, and even then, even with him, it still took me far too long — long past my trauma therapy — for me to really face OCD and start talking about it. Because the pattern was obvious at this point between the two of us. It was just in how we were able to deal with our patterns that was different. He externalized the chaos of his mind when suffering, while I formed a pattern to contain mine inside.
I couldn’t understand for the longest time why his was less controllable, less manageable — I thought a failure of the self, of character, whatever cruelty my trauma formed psyche would think when being unkind to feel better in my own struggle. But the reality was, he was able to stop his patterns while I wasn’t seeing the output as the problem. I thought I was coping by giving in with creative, beautiful products, while he had stopped the cycle and was facing it (or was too overwhelmed to even give in, depending.)
Trauma taught me to internalize, to avoid allowing people to see my pain to help, because a part of me saw that as pure vulnerability, and at my most vulnerable was when I was harmed. He had a better time of things, and was able to externalize and ask for help, allowing him to function in the world as a result, even if the world is still so imperfect and requires all the energy for a little bit of assistance.
It’s not a creativity aid, though
Writing with OCD, for me, is writing patterns, while being aware you’re writing patterns… and judging yourself for those patterns, and fighting those patterns, and trying to find a compromise with those patterns. Where everything has to mean something. Where you have to hold it all in your head to ensure you get it all correct and do it the ideal way. There is no ease when writing like this, but instead deliberation. The fun is in solving the problems you made for yourself by insisting everything needs to fit a certain way. Solving the structure that makes it suspenseful or emotional or sexy. A pattern is being built, and either you see it once a bunch of ideas are thrown on the page and you get to organize the chaos and bring deliberateness to it. Or it’s built from the beginning, and you’re just fighting with yourself to keep the shape, the form, fit the structure, and make it amazing.
I spend too much mental energy and fuel in doing things that don’t require all of that from me. And maybe that’s partly why I’m tired all the time, because I’m battling a brain that needs to build and climb a mountain — and stress test it a few times in different ways to make sure it works — before writing the next paragraph. None of this means my writing is any good, by the way. Just that it fits the pattern in my head, and believe me, that is absolutely the only measurement I have for if I’ve achieved something with the things I make or not. There is no room in here for external validation — or questions of validation. I have enough with one pattern, and adding in all these potential patterns that I’m not familiar with, asking my brain to reform around multiple ones, is too chaotic and overwhelming. I have enough false points of view in here; it is madness to intentionally add more.
But I do at times, because something convinces me when I write, usually when I edit, that the pattern I’m following needs to be refined to someone else’s standards, and that will then be magnified to an extreme that I cannot handle, even as my brain is the one building the structure.
When my illness reached the stage of cognitive loss after building the cleanroom, as difficult a way to live as that was, my executive functioning flatlining one after the other, there was peace there. The pattern was still there, but the demand wasn’t. There was no point in attempting to follow a pattern my brain had grown too inept to follow. What could the world truly demand of me that I honestly thought I could even respond to, when most of my days were spent trying to remember there was a hallway outside my door, or that one needed to eat, and dress, and take care of the house?
Getting my brain back has reminded me of how sharp its teeth are, and I am still left with few skills to deal with it. Because my saving grace was a broken brain. Complete avoidance of the things that trigger it. As long as I couldn’t make art, I would never be constantly comparing form to lines to colors to conceptual meaning, trying to inject something into marks on a screen. As long as I couldn’t hold thoughts in my head from poor working memory, I didn’t need to go through a dozen variations of words, sentences, concepts, reforming for impact, for emotion, for readability, for clarity of thought. As long as I didn’t work on my business, I didn’t have to conceptualize me, broken and flawed, in the middle of something that had built expectations in others for time, for productivity, for ability and satisfaction.
I was free when I was broken. Now, I’m tied back into the pattern with a brain getting the dopamine fuel it had been starved of for all these years, and it has energy to be so much more vicious.
Nothing is new
I am remembering how to live with this beast, a more dangerous version that has lost so much idealism and optimism. Its demands are greater the more I shirk away from the patterns it wants, and it leaves me frozen, not externalizing in a helpful way, but internalizing the battle before the pattern. And if my creativity was me giving into the pattern to “cope” with it, then creativity is now me losing to the pattern, or having built a cage so structured and refined, I feel safe enough to step inside to create.
This is harder than before.
I want to avoid it because I want to avoid the pain my brain inflicts on me as it magnifies every stray thought into something that needs all of me. I don’t know if this database is going to work, because I see that part of its creation was me giving into the pattern in a safe way, one not connected to the psyche in the same way as my writing and art is. It is an escape from the thing waiting for me, asking me to have to battle with my brain in ways I’m not sure I can win.
Because before the cleanroom and my “brain breaking”, I wasn’t doing those things I started doing every day. I wasn’t getting dressed or eating or taking care of the house. I was writing. I was so sick I could barely move, and I put everything into writing because that’s what my brain demanded of me.
There is no mercy in it. Negotiating is an expenditure of energy before the required war of battling the brain while doing the task, and then the war of pulling it away from the task. And I suppose it doesn’t need saying, but I do not trust my brain to let it do whatever it wants. Not because of how it won’t fit with societal norms, but because of all it has learned. If its sharp teeth can hurt me so, what defenses do other people have to it?
Am I justifying an obsessive pattern of difficult behavior because I’m terrified of my own brain? It certainly seems on point for OCD. Certainly on point for trauma.
None of this is new, just different levels of intensity. The break from it all, that was new. That was… both bliss and suffering to not be myself. I’m not worried that I won’t be able to write. I’m worried I won’t be able to live a life and write. Also not new.
I’m worried the battles I feel compelled to fight will tire me out the way the illness did, and bring me back into that half dead state… and unfortunately, that’s not an unfounded fear.
My emotions have had a huge impact on my immune system responses. Stress has a huge impact on my immune system. Lack of sleep, mood swings… all the things that happen when I’m not caring for myself because I’m caught up in a neurotic hyper-focus of work leads to my immune system being more self destructive than protective.
And this new level of health all feels still so unsafe. So… fragile.
MCAS
MCAS is the next rabbit hole my doctors and I are going down. Mast cell activation syndrome. It had fit before, and was one of the things that had looked exactly right when I was deep in it, but my blood test was negative so I dismissed it quickly to focus on more useful potentials. It wasn’t until recently that I was informed that there are different versions, and that the blood tests only find one variation — and not necessarily on the first try. So this is the next direction.
I’m tired of all the energy I dedicate into getting better — I know, so fucking selfish after being allowed to get better — but it’s true. I’m exhausted every time I think about doing another thing for “my health.” Resilience isn’t a choice, isn’t a rallying of will to persevere. It’s just another pattern of my ravenous brain that won’t let me rest and focus on living the life I do have.
I don’t know if MCAS is the answer, but truly, it has so many promising fits as it understands poor modulation of the immune system. It can respond to anti-histamines, as well as show the link to dopamine and histamines — something I stumbled upon when experimenting with L-Tyrosine and mucuna. It’s also hope with the neurosis because of how histamine and compulsion are connected, how histamine and dopamine are connected — my ADHD brain has be running off of the chemical cascade my allergies and overactive immune system have been causing, which is why it’s been so chaotic, so confusing to have a stimulation and a bettering of health, followed by the crash as the consequences wore on in the body.
I’m allergic to eggs. Knowing this, I would eat an egg every morning at the time I wanted to switch my sleep cycle to (instead of my default of sleeping through the morning and waking after noon) because that immune response wakes me the fuck up and won’t let me sleep. This has been my battle for a lifetime, the way I become alive only when everything is going to shit, and how it all crashes when I reach “okay.” The cleanroom worked; I stopped having histamine responses every moment of my life. And then my executive functioning crashed and stayed crashed until I got an ADHD treatment.
MCAS also links to the vagus nerve therapy that had been so transformative when my house was overrun with mold. It was as simple as a tens machine with ear clips on the tragus, that I used to stimulate the vagus nerve. After enough time, it healed so much of my system so that I could digest again, and finally calmed my racing pulse. There also seems to be a connection — I haven’t read enough to truly know if it’s true or not — with upper spinal pain harming the vagus nerve, and it’s left me wondering about the formation of the small hump on the back of my neck and if it’s having a poor impact on the vagus nerve and immune modulation as a result.
MCAS doesn’t require protein to stimulate an immune response, which could be why so many chemicals/scents set me off — but also means allergy shots won’t solve it. It’s not uncommon to have the burning mouth syndrome and nerve pain in the face thing I had with MCAS either, so another connection. Same with the years of gut issues and oversensitivity (currently been feeling vommity cuz I recently added something I thought was healthy to my diet, but is histamine high.) And that stress and emotionality has such a huge impact on my health makes it a good candidate for the source of all these issues.
There’s a danger in only looking for one thing when faced with so many problems. Maybe I prefer it to collecting a bunch of diagnosis… But it’s satisfying to have one neatly placed label on top of it all, so my brain keeps looking for the way to organize the chaos of being alive.
I want an answer. I want some sense of predictability in all of this. Maybe then it won’t feel so fragile, these good days. I won’t have to think down a million different what ifs to find the most likely issues and test, and then do it again when that doesn’t work, over and over until reaching a balance again. Fuck, maybe I’ll gain a ritual of health out of it that actually works, instead of doing things that either feel like superstitions to try to keep pain and illness away, or me running and self destructing as I cope.
I want the answer and everything that comes with it…
But for now, I’m facing my OCD, the neurosis that is both protective and destructive on my journey. Writing isn’t hard — writing this proves that I can write still. But the things that get in my way are currently in my way, and that’s hard. The more energy my brain gets, the more this fight can either be the hardest one yet, or so fucking simple, depending on if I can let my brain get out of my way. Addressing the problem helps. Talking about it helps… so I’m trying.
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