compulsive disorder (OCD) in the dictionary, actually in two dictionaries. It was in neither. So, while I'm reasonably sure I've had it for years, I'm not sure, clinically, what it is.
Is that, in fact, what I've had? In all our years of fruitful, albeit rambling and circuitous discussions, I've never pinned you down and demanded, point-blank, a diagnosis. I mean, if I were to die tomorrow of mental rather than physical causes, would "obsessive-compulsive disorder" be inscribed on my death certificate?
I hit my head against that wall firmly -- not hard, not soft, but with resolve. It was a comfort, it was a blessing. It was solid.
The truth is I've suffered keenly and exquisitely, and it is my nature to joke about it. Humor -- making light -- joking -- minimizes pain. It also camouflages it.
I am fortunate to remember the onset of a maddening mental framework of repetitious, strangling, punishing thoughts and impulses: when as an eight year old, newly delivered to the orphanage, I discovered and embraced that cinderblock wall with its wonderfully straight and reassuring horizontal lines between the smooth cinderblocks. The right side of my head, probably a square inch or so, united with the line in the wall; my eyes focusing and aligning so perfectly with that line and staring down its expanse, as if at railroad tracks laid out monotonously to the horizon.
I don't know if anyone saw me the first time. I'm sure that in the months to come some nun, some other kid, some housemother, would see me. No one I can recall ever confronted me, even gently, with a rebuke or a question.
I was one of dozens of children at Saint Joseph's Village for Underprivileged Children. I can imagine now that the nuns, prefects and other adults must have witnessed many variations and manifestations of pain, of calls for help, of self-punishment rituals. No one stopped me, so I did not stop myself.
My damnably creative mind went ahead with its work, its task of building. Like a bird that scavenges twigs and other bric-a-brac of nature, I gathered from everywhere possible, stuff with which to build. To construct an air-tight protective casing, an impregnable superstructure to preserve and keep in all that was precious to me and all that was precious about me. And to keep out the further dirty work of adults who would devour me with their lust, parade before me with their naked, dark venal sides exposed and who felt no shame because I was a child.
I simply had to survive. I have spent years telling you the story, and I have been at the same time disconnected from it. It is not a nice story. It is not nice that my father died when I was two years old. It is not nice that my mother had two devastating nervous breakdowns and was banished to the mental hospital while I was probed and poked and sent to the orphanage. It is not nice that I was sexually molested in the orphanage.
In the face of disaster, I picked up the rubble, the debris, and started to build. If I had been on a beach, I would have built a sandcastle; if on a field of snow, a snowman.
I was as singularly and as thoroughly alone as it is possible for a child to be. I slept in an institutional metal frame bed in a room, a long and narrow room with nine other beds.
Outside that room was The Wall. I set to work, building. I did not know that the process of building and encasing would bring its own devilments. Obsessive-compulsive disorder. Sort of a mental milk of magnesia. It's horrible, but it does help you deal with the crap.
Author's note: I wrote the preceeding letter in 1989, two years before learning about my HIV-positive status. In a very real way, the years of living with obsessive-compulsive disorder prepared me for living with the challenge of HIV. Both are conditions which will not go away, each has emotional ramifications, and neither has a ready cure.
When I was a teenager (and later a young adult) I would have paid any price to have my OCD taken away. Like a powerful and unshakable drug addiction, it was a monkey on my back. It wasn't until years later -- when I met Dan Bloom -- that its status as an actual clinical disorder became apparent to me.
Having learned to accept and live with obsessive-compulsive disorder, I have realized in middle age that I cannot live without it. I have no doubt that it has driven my creative spirit (while at the same time fueled my paranoia); it has sparked my passion for accuracy (while making me appear quirky and all-too-singular); and it has helped me, ironically, simplify my life (while making me seem, at times, excessively rigid) More than anything OCD has made me sensitive to the unique and highly personal burdens of others. I once saw a sign outside a church that said "Be kind. Remember everyone you meet is fighting a hard battle." I'm reluctant at times to look at life as a battle that never quite ends. But if death is the logical alternative, I have no choice but to be a happy warrior.
Back to the August 1998 Issue of Body Positive Magazine.