It ended with a drive to Staples to buy a fax machine. That was the last time Dr. Stephen P. Kelly saw his son alive. It was the afternoon of March 28, 2011, and John Cleaver Kelly was a week shy of turning 25. He had been diagnosed with obsessive-compulsive disorder (OCD) while in middle school and had fought the affliction—marked by crippling fears and equally crippling repetitive behaviors—through the prestigious Regis High School in Manhattan and then Colgate University, where he majored in psychology and wrote for the college newspaper.
Now he was back home in Dobbs Ferry, New York, marinating in the psychic unease that had lapped at him since childhood. In the journals in which he had been chronicling his disorder since the ninth grade, Kelly wrote that the last time he remembered feeling “somewhat normal” was during a study abroad term in China. That had been in 2006. The last time he felt fully normal was in 2001, when he was 15.
By 2010, his condition had become unbearable. On December 1 of that year, he tried to commit suicide by mixing booze and prescription pills, then plowing his car into a tree. His father, a genial small-town doctor who projects seasoned solidity, had his son committed at Yale-New Haven Hospital the next day, figuring that the quality of care would be first-rate. He regrets that decision, calling the experience “horrendous.” It was the holiday season, Kelly says, and only inexperienced medical residents were on hand to treat his son. (The hospital did not respond to a request for comment.) John got out on leave on December 17, checked into a hotel and tried to hang himself in the shower with shoestrings. Back he went into Yale-New Haven.
“I don’t have any faith I am going to get better here,” John wrote in his journal at Yale-New Haven after the second suicide attempt. “I feel like the hospital is contaminated.” In another entry, he wrote, “I’m scared my OCD is telling me I won’t get better until I leave here.”
About 2.2 million American adults suffer from OCD, an anxiety disorder that appears during the teenage years (the average age of onset is 19). While the symptoms are myriad, a single pattern is common: intrusive thoughts of impending doom (the O) can only be staved off through repetitive actions (the C) that offer but temporary relief. Therein lies the D. In her landmark 1989 study, The Boy Who Couldn’t Stop Washing: The Experience and Treatment of Obsessive-Compulsive Disorder, Dr. Judith L. Rapoport writes that for people with OCD, “everyday life becomes tyrannized by doubts, leading to senseless repetition and ritual.”
On January 26, 2011, John came home to Dobbs Ferry, a town nestled on the banks of the Hudson River. It is a suburb of ethnic whites with city roots, a place where traces of the old immigrant toughness remain, where a few years ago, admitting to psychic distress might have been occasion for hoots and jeers. When Kelly returned, he resumed working as a psychiatric assistant at a well-known psychiatric center in Connecticut. He also began outpatient treatment on Long Island, at an out-of-pocket cost his father estimates to have been $250 per hour. The drive was 75 miles each way, and John made it on his own, in the same car he’d used to try to kill himself.
In March, Kelly decided to send his son to McLean Hospital, in Boston, often regarded as the finest psychiatric hospital in the nation. John was admitted but needed to fax some materials to McLean. The Kellys didn’t have a fax machine in their house, so father and son decided to go to a nearby Staples to buy one. John drove. The Staples, in Scarsdale, New York, was near the Planet Fitness where John exercised. He dropped his father off at the store. They arranged to reunite at the gym.
“I never saw him again until the wake,” Steve Kelly told me. When Steve arrived at Planet Fitness, John wasn’t there, so he had his wife, Janet, a nurse, pick him up. They thought that maybe John had headed into New York City for an OCD support group. But he hadn’t. Instead of going to the gym, John had driven to a garden supply store and then most likely back home before heading out again. He had decided to commit chemical suicide, which involves “mixing common household chemicals into a poisonous cloud of gas,” according to The New York Times. The method had become popular in Japan, and instructions were available online.
After four hours, John’s parents became worried. Steve told me that he was driving to the police station when a fire truck roared by. At the police station, he heard a report of a young man unconscious in a black Jeep Liberty. Steve knew. “I ran home to my wife, and we screamed and cried,” he says. Police had found John’s body inside his car on a back road near a golf course, parked on the cusp of what Steve says is casually known as Suicide Hill. According to one account of the scene, “There were signs in both the drivers and passengers windows that said ‘CALL HAZMAT.’” Today, his friends point to those warnings as evidence of John’s concern for others.
Gurgling at the Waterline
Obsessive-compulsive disorder is the plague of having a mind only half mad, so that it is always aware of its own madness. By comparison, raging psychosis or blinding depression create a reality so thoroughly occluded that the afflicted often don’t actually have to worry about it. Those with OCD know they have irrational ideations that lead to irrational behaviors: I had a bad thought about my boss, so I need to tap my desk seven times, then pause and tap eight times, then nine, or else she will find out and fire me. “People have thoughts in their heads, they recognize them coming from their own brain, and yet they are foreign,” explains Christopher J. Pittenger, who heads the Yale OCD Research Clinic. Those thoughts, he says, “feel different, they are experienced as ‘other’—somehow imposed.”
John Kelly knew well both sides of the OCD mind, both the irrational fear and the rational recoil from that fright. His journals show a young man struggling with his disorder, sometimes convinced of victory, at other times gurgling at the waterline of despair, trying with all his might not to sink to the bottom. “Remember, these are brain-farts,” he wrote at the top of one notebook page.
In the eulogy Steve Kelly delivered for his son, he spoke of the “many psychiatrists” John visited, of the “innumerable potent medications which could not control his OCD…. [John] was tormented by his OCD and tried everything to escape from these tortuous thoughts. He was at war with his OCD and was defeated by it. His OCD would only die when he did. He could not soldier on.”
‘Masturbate Eight or Sixteen Times…’
Until recently, obsessive-compulsive disorder was more comedic fodder than distressing mental disorder. It was a collection of charming quirks, of odd but harmless Woody Allen neuroses. In the 1997 movie As Good as It Gets, for example, Jack Nicholson plays Melvin Udall, a successful Manhattan novelist whose bluster disguises an addled psyche. He dances along the sidewalks, avoiding cracks and strangers; at a local eatery, he brandishes his own plastic silverware. The film is accurate in its depiction of the disorder, but Nicholson plays the part with ironic archness. Melvin’s psychic pain is little more than a punch line. A damn good punch line, too: Nicholson won an Academy Award for his performance.
Five years later, Monk premiered on the USA Network, with Tony Shalhoub playing an obsessive-compulsive detective. In a post for Psychology Today titled “Why Monk Stunk,” Fletcher Wortmann, who has OCD, argued that the show, which ran for eight seasons, portrayed the disorder as “[h]ilariously inconvenient, painfully superficial, improbably untreatable…. I have no problem with jokes about OCD,” Wortmann wrote, “but I do have a problem with entertainment that permits audiences to laugh at the disorder without showing them the terror and despair and shame and self-loathing that many OCD sufferers endure.”
In recent years, though, OCD has finally started to transcend its image of silly fastidiousness. It may have begun in June 2013, during the 2013 Rustbelt Regional Poetry Slam in Madison, Wisconsin, when a recent Macalester College graduate named Neil Hilborn took the stage to read a poem called “OCD.” Hilborn had grown up in Houston and was diagnosed with OCD at 11. When I spoke to him, he described a childhood rife with classic symptoms: hand washing, door locking, a plethoric concern with death.
He wrote “OCD” during his senior year at Macalester. The poem had once been “purely funny,” but by the time Hilborn read it at the Red Gym in Madison, he had sharpened it into a meditation on romance strangled by his mental illness.
“The first time I saw her, / Everything in my head went quiet,” Hilborn says into a microphone as a camera films him in profile. He looks like an impassioned lumberjack at a public hearing. “All the tics, all the constantly refreshing images just disappeared,” he says, his voice growing increasingly intense, chronicling the ménage à trois of narrator, girlfriend and illness: “She loved that I had to kiss her goodbye 16 times, or 24 times if it was Wednesday.” Eventually, the woman tires of his OCD and leaves him. But he holds out for her return:
I want her back so bad,
I leave the door unlocked.
I leave the lights on.
There, the poem ends. Though the performance lasts less than three minutes, Hilborn is as exhausted as a preacher on a Sunday in late August, leaving the stage without acknowledging the deluge of applause. The recording, which was made by Hilborn’s publisher, Button Poetry, went viral later that summer, with the usually snarky Gawker calling the poem “hauntingly stirring.” Today, the video of “OCD” has gotten 8.5 million views on YouTube. Hilborn believes he is helping change people’s minds about the disorder. “There’s a lot more respect out there,” he says. Sometimes, fans confess to him: “Before I saw your poem, I thought OCD was just a quirky thing.”
Hilborn isn’t the only one changing minds. On March 10, 2013, the HBO show Girls, popular with coastal millennials, aired an episode in which protagonist Hannah Horvath, played by Lena Dunham, confronts her OCD. She is, like Nicholson’s Melvin Udall, a writer, though a young and struggling one. Getting what she wants—a book deal—exacerbates her symptoms. When she goes to see a therapist (played by the perfectly phlegmatic Bob Balaban), he informs Hannah that hers is “really a classical presentation” of OCD. Upon hearing this, she erupts in outrage: