This story is part of our blog series called “Stories from the OCD Community.” Stories from the community are submitted and edited by Toni Palombi. If you are interested in sharing your story you can view submission details at www.iocdf.org/ocd-stories.
I was three months old when I had my first open heart surgery. The second came when I was six, the third when I was eleven. I was born with something called truncus arteriosus, a rare heart condition requiring continual replacement of one of my heart valves. This became the norm for me, a scared kid dealing with repeated medical trauma, and from that trauma came obsessive compulsive disorder (OCD), though I wouldn’t realize it until much later.
As a kid, I always had this underlying urge to count in my head: counting objects, grouping things in numerical categories, or just counting upwards for no reason. My mind always seemed too busy, full of conflicting thoughts and ideas, not all of them pleasant or rational. And I might check things, but only briefly, fleetingly. These compulsions and intrusive thoughts were mostly just background noise until I was much older, had graduated college, and was beginning to feel lost without that sense of structure school provides.
Then my dog died.
My parents gave me a dog shortly after my third major surgery, to give me someone to love, a way to heal. Louie the pug was my constant companion for almost fifteen years, then one day he got sick and didn’t get better. We choose to put him to sleep.
Several months before Louie fell ill we had gotten two more pugs, then just tiny pups. Louie’s passing became a trigger for me, and my latent obsessive compulsiveness quickly turned into a severe condition. I became obsessed with keeping these new dogs safe from any potential threat, no matter how absurd or unlikely. I would meticulously, laboriously check everything from the stove to the front door and the gate in the back yard, to make sure they couldn’t get out and disappear forever, or get hit by a car. I tried to limit the time and energy I spent checking, but it only increased, until at the height of my struggles I was spending about four hours every night checking at least a dozen different items and objects, dogs included.
It was at that point I realized I had a serious issue. The logical part of my brain told me a “normal” person wouldn’t struggle like this, could easily check things if they felt the need to, then just as easily walk away without agonizing like I was. Then I did something very difficult: I told my parents I needed to see a therapist, and asked for financial help. They agreed.
My parents have always been supportive, were there for me through each of my surgeries, for every checkup and echocardiogram I had as a child. They saw me struggling with OCD, saw it begin to take over my life, and once more stepped in to help. Yet unlike all the other times my parents had helped me, this time was different: I had to ask for help. This wasn’t easy—far from it—but I saw how I was “living,” saw how much the anxiety and thoughts and compulsions really were taking over my life, and I knew the worst thing I could do was nothing at all. So, I asked for help.
That was three years ago, and I’ve since worked with several therapists, and continue to do so. I’ve learned much about OCD and post-traumatic stress disorder relative to me, my challenges and experiences. I realized that I’d been obsessively trying to protect the dogs because losing Louie hurt so damn much, and I wanted to keep them safe as a way of protecting myself from the possibility of further pain and loss.
I wish I could say that OCD is a minor part of my life now, but the truth is I’m still working on managing it. Therapy has benefitted me greatly. I’ve learned much about myself in the process, why I do these things, strategies to respond and cope. Being able to stop and walk away from the thing I’m worried about and just feel the fear that comes up is something I’m actively working on. I still struggle with anxiety and uncertainty. They say that dealing with OCD comes through learning to accept that uncertainty, which sounds simple, but may actually be the hardest thing I’ve ever done. Which is where the issue of self-trust comes into play.
There are always those moments when new challenges pop up, and life slides sideways. Just recently, I was hospitalized for sepsis, which inevitably brought up past trauma, yet also put me in a position where I had no choice but to trust myself. Because of my heart condition, I had to undergo a rigorous home infusion program after I was discharged.There I was, working with an IV at home, doing infusions every six hours for almost a month. The fearful thoughts crept in: What if I missed an infusion, damaged my heart, or accidentally contaminated the IV line and got infected all over again?
Despite my fear and self-doubt, I kept going, two grams of ampicillin at a time, until I’d done over one hundred infusions, and completed the program. Throughout all this, I was able to trust myself just enough to get to the next infusion, and the next one, gradually realizing that overcoming OCD requires a combination of accepting uncertainty, finding support and guidance in friends, family, and therapists, and finally, being able to show up and support oneself, to really trust that you can do it.
I have good days and bad days, moments of ease and moments of panic and uncertainty. But for the first time in a long while, I feel like I’m on a path, actually headed somewhere, hopefully somewhere good.
Kai is a writer from Tucson, Arizona who lives with two pugs and a hyperactive but well-meaning brain. He hasn’t yet fully conquered obsessive compulsiveness, but believes he’s headed in the right direction. His work has previously been published in Cornell’s Ezra’s Archives and Rainy Day, as well as numerous other literary publications.