I hesitated too long. Why? Why did I pause like that?! Grab it! I reached my hand out, still tentatively, toward the door knob and the moment my index finger just touched the door handle, it was like out of some movie, I was transported with a surge of memories that raced into my head and took me back to those moments at the clinic. Somewhat unnerved, I pulled my hand back a little. Perhaps this door handle was reminiscent of the one at the clinic all those years back and somewhere my subconscious recognized the familiarity to the clinic’s door handle, so reflexively that just like I had done then, I paused before I grabbed the door handle. But this wasn’t a clinic. It was a regular office building and it had been a long time since the day I went inside the clinic. Why was I remembering everything again now and here of all places? On closer inspection, there wasn’t anything particularly striking about this handle. But as I knew too well, it only took a minute detail to evoke a distant memory. There was something about this door handle that yanked the memory of the day I went inside the clinic from the archives.
Without my knowing it, visiting the clinic was part of my treatment plan from the first day I checked in to McLean. Had I known that, perhaps I wouldn’t have checked in to McLean. I went to McLean when my OCD was at its worst so the idea of visiting an HIV clinic would have been unfathomable. But I informed Therapist Jared upon our first meeting that I would do, or at the least try to do, whatever was necessary to get better. Continuing life in the deep misery of OCD was no longer doable, so I had to try to get better. However, “whatever was necessary” was relative to my spectrum of tolerance at the time and being near, let alone visiting an HIV clinic wasn’t within that spectrum. Yet slowly and through progressively more challenging ERPs, Therapist Jared was able to normalize whatever the next level of “danger” was that sent the OCD alarms screaming shrill. Eventually we got to that last level – an actual HIV clinic. It wouldn’t be an abstract association that my OCD would make via the vastly broad OCD association web, but the actual thing my OCD tried to connect everything else in society to. There was no needed connection to the fear of where HIV could be. That clinic is where HIV would be.
When Therapist Jared informed me of the target location and the target day – the last level of my ERP hierarchy, I felt anxious. Definitely not overwhelmed with panic as I would have before therapy at McLean, but still there was apprehension. This is what I had feared, irrationally yes, but feared nonetheless for so long. My OCD had elevated that fear to its purest form and made it so concentrated and acute that it ruled my thoughts and every facet of my life for the past few years. An irrational fear so intense it was systematically destroying my life. It killed many relationships and damaged all the rest. It halted my career and made me seem incompetent. It gave me a reputation as somehow mentally damaged and thereby stripped me of my sense of identity, confidence, security, and made me question my own sanity. And all the while I was aware of the damage being wrought. That’s how I knew I wasn’t yet insane, just tortured. My diseased thoughts became omnipresent and ruled every action I took in every waking moment for years now. Years….
But now I was to challenge those thoughts. I was to face my fear. In any other context I would have approached the challenge with confidence. I became afraid of flying but continued to do it regularly until the fear was manageable. I used to be shy but became so apt at public speaking, I ran for student president of my university (I lost). And when a doctor informed my dad I had OCD as a teenager, I resolved to overcome my weird habits like excessive hand-washing so that by the time I went to college, I would seem normal. And I did. Until that fateful trigger after college that took me down and turned fear into something I hadn’t ever quite known before. Severe OCD isn’t just fear really. It’s terror. Sheer terror. Pure, toxic, intense, all-consuming, overwhelming, terror that leads to a perpetual state of panic. Years of it.
Why did OCD resurrect itself so intensely when it did? Since that trigger, I had been asking why constantly. I didn’t ever get the answer. Why? Why did I become scared of AIDS and HIV this way? Why, when in high school, I worked with a guy who had HIV and died of AIDS while I was in college? Why when I learned about his death in college and the cause of it, wasn’t I shocked or sent into a mental spiral then? Why, after hearing he had passed away from AIDS, was my reaction the normal one? Why did I receive the news without much surprise but with much sadness, and with the absence of any fear? How did that not trigger me and yet years later after college, how did I suddenly become fearful of HIV/AIDS in the OCD context? A fear I hadn’t really had before even when my OCD was very evident in my teenage years.
After I sought professional help and started to see therapists in Los Angeles, of course I asked, “Why?” What I initially heard really surprised me. I learned that my form of OCD, specifically my irrational, widespread obsessive fear of HIV/AIDS wasn’t isolated. Upon divulging what felt like an admission, therapists and experts on OCD would commonly respond with, “Oh you’re one of those,” or “Ah yes, the HIV/AIDS OCD,” which was quite astounding to me. How was it that there were other people whom I hadn’t ever met, who were completely different from me in most ways, from demographics to life experience, who somehow had the exact same very specific OCD, the fear of HIV/AIDS, as I did? It was mind boggling to me. How could such a specific kind of OCD manifest commonly in the brains of completely unrelated individuals?!
Perhaps the answer wasn’t as complicated as I thought. After all OCD exploits our darkest fears and dying from disease is certainly a fear. However, again OCD removes the science and known data associated with a disease, such as cancer isn’t contagious or HIV can’t be transmitted by casual contact, and makes that understanding irrelevant. Indeed, it makes the OCD sufferer fear harm by the very means the sufferer knows to be false. That’s understandable. But the specific fear….why are there others with OCD that focuses on HIV/AIDS? I came to better understand this via the nurture aspect of sociology. Fears are learned. As a child of the ‘80s, the AIDS epidemic was both highly mysterious and menacing. It wasn’t the disease it has become. It wasn’t chronic. It was a death sentence. It was new and little was known about it other than it was swiftly destructive and very deadly. So as an impressionable child, I came to know it as something very scary. Many people were scared. I still remember seeing a PSA on TV in which a very solemn Meryl Streep addressed some of the misconceptions surrounding AIDS. It was summer, so I specifically remember her assuring the public that you can’t get AIDS from being in a swimming pool. That’s how relatively little public knowledge about it was when I was a kid; a fear which seems trivial today, actually had to be addressed so publically with gravity.
As I got older and as science and medicine advanced, the disease became something treatable and manageable so it wasn’t as scary as it had been. Yes, still something to be cautious and vigilant about, but no longer panicked about. I wasn’t scared of it and didn’t even give it much thought. Indeed there wasn’t much I was scared of. As I grew older, I became braver. And then years later I was triggered by something. An innocuous, completely harmless thing, but that didn’t matter. I was triggered and OCD seized upon that opportunity like never before. It had long been dormant and was ready to make a roaring comeback. My moment of uncertainty, my trigger and subsequent anxiety spiral, afforded it that opportunity. Coincidentally, or perhaps not so much so, this trigger occurred at a time when I was coming to terms about aspects of my identity I had long suppressed. Consequently, I was feeling quite vulnerable and uncertain. So OCD took advantage of that and perhaps seized upon something that would be conducive to further inhibiting my identity. It exploited my fear of authenticity by making me irrationally fearful of something strongly associated with a particular demographic when I was a kid.
Years later, after I was more accepting of and open about myself and after I had received treatment at McLean, I asked Therapist Jared if my particular OCD was correlated to my vulnerabilities about identity. Did Kierkegaard nail it when he philosophized that anxiety would always manifest whenever one contemplates getting closer to one’s true self? (Referencing Kierkegaard was probably somewhat obnoxious to Therapist Jared, but I was trying to be analytical). Therapist Jared felt there’s no way to be certain as yet if there is a correlation, and since that particular OCD isn’t uncommon, it may have just been the bad luck of the draw.
Whatever the case may be, my OCD manifested itself aggressively and destructively so I was too consumed by the irrational thoughts and behaviors to spare any time for real understanding. I was so driven by intense, irrational fear that manifested in odd, time-consuming rituals and all the fallout from that behavior, to think about how my identity, my true way of rational thinking was not only being sabotaged, but erased. I was so consumed by OCD that I couldn’t really pause and think about how OCD thoughts and avoidance behaviors were in complete opposition to who I was intrinsically; to who my parents raised me to be; to the compassion they instilled in me; to not avoid those who may be in need or marginalized, but to reach out to them.
During the years my parents were on assignment in Yemen, I distinctly remember seeing my mom’s interaction with the street beggars who came up to our car when we stopped at a red light or were in heavy traffic while driving to some place in the dusty city. I remember watching her, this beautiful, sophisticated woman, roll down her window and place her well-manicured hand into the dirty, worn hand of the beggar and make sure the money was kindly placed in the beggar’s hand without condescension and with compassion. She was almost matter-of-fact about it and made it seem like anything but a (literal) handout and more just the proper default social response. She just came to be in a current position that enabled some financial security, so felt it rightly expected of her and others like her to provide for those who currently were without. She also believed in karma and felt she was bettering the odds of it staying good. So in that sense it was an even transaction. Her small act of charity would provide good karma. The way she gave the money, her matter-of-fact expression and body language, conveyed it was a fair exchange so there need not be any sense of indignity to ask for the money. As I watched my mother in those moments, my child-heart smiled. This incredibly decent woman was my mother. I felt proud and aspired to emulate her sense of giving to those in need.
For a while, I was somewhat successful. In college I co-chaired my university’s Community Affairs Board, tasked with organizing volunteer events for students to benefit the community. We held canned food drives, toy drives, served meals to the homeless, etc. But after college, my OCD came back with a vengeance and all innate charitable inclination was placed on hold for the sake of survival. For the false sense of self-preservation. Possible encounters with any demographic my OCD now aggressively enforced as “dangerous” were to be strictly avoided. My nice memories from Yemen of my mom giving money to those in need now made me shudder. The microscopic OCD lens in my mind’s eye now thought about her hand coming into direct contact with the long unwashed, crusted, bacteria-laden hand of a person living off the street. My mother’s hand, the same hand that prepared my food, touched my face, and ran its fingers through my hair. My memories changed from admiration to bewilderment that she could be so careless. OCD had turned me against the kindness of my mother. OCD robbed me of the happy feeling I used to derive from reflecting upon those memories and replaced them with a sense of revulsion. As always, I hated myself for it. But I knew there was no other feeling other than contemptable ones I could derive now from those memories. OCD made that certain.
But then that day at the clinic, thanks to Therapist Jared and others at McLean, I was able to get back the humanity OCD tried to rob me of. I was again able to apply the lessons of my childhood that I observed and believed in, such as treating others with dignity. Because that day at the HIV clinic, despite OCD’s ever nagging presence, I was able to confront the bully and open the door. Since my visit that day was an ERP session, a counselor from McLean, Stacey (who was my favorite because she laughed at my bad jokes) was with me. I pulled open the door and she followed me inside. Our pretense was that she would ask about volunteer opportunities while I explored. She plopped her tote on top of the counter in the very small reception area. I looked at her tote and remembered another time when a purse yielded terror. Except this time, it wasn’t an abstract association. This tote was on the counter of an actual HIV clinic. My OCD alarms started to sound off but I didn’t let them freeze me in place. I relied on the habituation I had acquired at McLean. I walked further in. I walked down a hallway and noticed a bathroom on my left. There wasn’t much else so I walked back to the reception area. I picked up pamphlets and looked through them. Then I noticed a man sitting down. He looked at me, so I smiled and waved a “hi.” I looked at more pamphlets but as I meandered closer to the seated man, he stood up. I don’t know if his name was called by the receptionist, or if he was being polite, or what. But I looked at him. He was looking at me. I extended my hand out to him and said, “I’m Ben.” He took my hand. We shook hands and he said something polite, I can’t remember what it was, then he walked on. I glanced again at the chair where he was sitting and around the small waiting area. Then I looked to where Stacey was standing at the reception counter. She smiled at me. It was a congratulatory smile. I was smiling too. I walked over to her and she asked, “Ok, ready to head back?”
“Yes,” I said.
She thanked the receptionist for the information. I opened the door and we walked out. Stacy had her tote straps over her shoulder so the tote was resting against her elbow. I noticed because it brushed against my arm as we walked away side by side. I smiled again.
“So how was it?” asked Stacey.
“Good I think,” I replied.
“And your anxiety?” she asked looking at me as we walked.
“It’s not too bad. I’m ok actually,” I said.
“That’s great! You did it!” she said with a big smile.
“Yeah. Wow,“ I said as I exhaled. “How did you feel about it?”
“Fine,” she said. “I actually may volunteer if I can.”
“Oh really? That’s great,” I said not knowing if she said she may try to volunteer because she really wanted to or because she wanted to convey she wasn’t scared to so as to further normalize the idea of visiting the clinic to me; to emphasize that there wasn’t anything to be scared about anymore.
Back at McLean, people were congratulating me for reaching the top of my ERP hierarchy. Therapist Jared asked Stacey and me about it so we talked about it together for quite a while. I could see he was genuinely happy for me. My roommate, Will, and the other patients congratulated me as well. I called my mom and let her know I did it. She had been nervous about my doing this ERP ever since I informed her today would be the day of my visit. She was glad I did it and relieved I was talking about the experience favorably. Every person around me was congratulatory and happy for me. I was happy for me too, but I felt some sadness at the same time. It hit me why after dinner.
I was sitting in the morning meeting room/nighttime TV viewing room. Zachary was playing something on the piano. Zachary, a fellow patient, had just turned the ripe old age of 22 but he played the piano like a seasoned aficionado. He was a music prodigy and had started playing as a very young child. Whenever his fingers nimbly danced on the piano keys with a speed that was optically difficult to process, but revealed his skilled agility, the most beautiful music emanated from that worn, dated looking piano. I think it also afforded him a distraction, a strong shift of focus, from his OCD. Tonight his fingers danced much slower than usual, even intermittently, as if aimlessly producing a somewhat random, yet still beautiful string of notes.
It was soft music and it was right for my mood. It helped me tap into the sadness of my day around my “accomplishment” for which I was being repeatedly congratulated. I thought about the context. Yes, within the realm of OCD I had braved a daunting and one-time seemingly unimaginable challenge. And I felt good for having done it. Proud of the strong “fuck you” that it was to my OCD. But if I thought about it as my former, pre-severe OCD self, what had I done really? I had visited a place where good people went needing help for their illness. OCD had made a normally humanitarian place, a place that should elicit good feelings about our collective social conscience to help others in need, into something that was absolutely terrifying. OCD had made me fearful of others who need not be feared, and whom I long knew pre-OCD need not be feared; the kind of individual that I worked side by side with when I was in high school and greatly liked. OCD made me fear individuals whom I knew need not be feared or avoided even during my severe OCD years, but was still compelled to avoid, over the screaming objections of my conscience and character.
That was what made it so hard – I knew it was wrong all along, but I couldn’t do anything about it. And now I felt guilt for my avoidance, and again, sadness. I wanted to let the person at the clinic whose hand I shook know that I was sorry. I wanted him to know that I didn’t ever really want to avoid him or others like him or any person my OCD compelled me to unduly fear. If anything, I felt for him and the real me, the non-OCD me, would have reached out much sooner. I wanted him to know that OCD had made me view the world through the very lens my parents taught me was blinding. OCD made me turn against my innate inclinations toward empathy, toward treating strangers with kindness, because I didn’t know their story, so I had no right to make any judgement. OCD made complete strangers, other fellow humans into a kind of mortal enemy. OCD turned me into my own worst enemy. OCD made me hate myself, the corrupted, mentally unsound, OCD version of myself, for all the things it was making me do and not do for its sake.
I hated myself for all the avoidance. I hated myself for the isolation. I hated myself for the years lost to being tortured by false thoughts and fear. Irrational fear! But above all, I hated OCD for making me turn into this ugly, distressed, servant to irrational, unfounded, needless fear! I hated OCD for what it did to me and I wanted to let the man know I was sorry! I desperately wanted that man to understand he should hate OCD and not me. It wasn’t me! It wasn’t the real me all these years! I really did know better! I knew all along! I just couldn’t do anything about it! My mind and life had been hijacked by that motherfucking bastard OCD, and I wanted him to know! Eventually my anger started to subside and oddly, I started feeling gratitude. My ERP, my encounter at the clinic, gave me some sense of redemption.
That’s because mostly, I wanted to thank the man at the clinic. When he let me shake his hand, I could try to imagine I was shaking the hand of every person like him. I was shaking the hand of every person my OCD sabotaged the opportunity to possibly meet and know. Every possible encounter my OCD interfered with and derailed despite brutal guilt, was represented by the man at the clinic who took my hand. Upon reflection it felt that he wanted me to know that he knew, and that others knew, it wasn’t me all along. They knew it was my OCD and they were congratulating me on not letting it steal this encounter as well. I took hold of the man’s hand and with it, I seized the moment from OCD’s iron grasp. It was my moment, not OCD’s. It was me living my life as I chose it to unfold and not according to the poisoned dictates of OCD. I wanted to thank the man for helping me declare “FUCK YOU OCD!” in that moment. In my head I yelled over and over, “FUCK YOU OCD, YOU MOTHERFUCKING BULLY BASTARD ASSHOLE LIFE-RUINING FUCKER! FUCK YOUUUU!!!!” It felt good.
I knew I still had work to do and I would be tried and challenged again and again. I knew, even then I knew, I wasn’t completely free. But now I had something crucial in my struggle against OCD. I was now armed with the tools I needed most. I don’t mean Cognitive Behavioral Therapy tools or Exposure and Response Prevention tools. They were the means to what I needed most of all – faith in myself and hope for my future. Spiritual tools. I had faith and I had hope and I had them in earnest. With those now tightly in my grasp I could take on OCD and move on from its hold. From its stranglehold. With those, I felt and believed I could win.
So perhaps when I grabbed the handle to that undescriptive office door, my old allies, faith and hope, were reminding me of that day at the clinic. Yes, I think so. See I had been struggling a little more than usual recently. I was feeling stress at work and a lot of uncertainty about my professional future. And again, in those moments of vulnerability, anxiety’s purest evil form – OCD, tries to re-emerge and assume a more prominent role. It’s an ages-old war tactic. But my allies, faith and hope were reminding me that they hadn’t abandoned me in this battle. I still had them in my arsenal and I needed to let them assume greater prominence than I had been allowing recently. That’s why I remembered that day at the clinic. Why…. A word whose purpose had proved so elusive when it came to OCD didn’t really need a reason anymore. I would let the experts try to answer the “why.” In the meantime I had to live my life. So I took a deep breath. I got a hold of myself. I got a secure hold of the door handle and I pulled open the door.