It’s not that Ed’s ‘quirks’ hadn’t been noticed on occasion by the rest of the family, but due to lack of understanding they’d been dismissed. By 1991, however, his symptoms, although still lacking an official diagnosis of OCD, were hard to ignore.
Whenever the Zine family gathered together for holidays, or birthdays, they couldn’t help but notice Ed was becoming more and more withdrawn. But avoiding people, even the family he loved so very much, was the least painful way for him to deal with whatever strange affliction now tormented him. He struggled to hide his embarrassing ritual of having to walk backwards up and down the steps, and doing so multiple times until it felt right. So he would simply remain down in the basement until everyone left. Ed’s older sister Tami remembers watching in disbelief the first time she witnessed Ed walking up the stairs backwards when he didn’t think anyone was watching. She didn’t understand what she was seeing, but knew this signalled a much bigger problem than anyone had previously imagined. At this point, though, she kept it to herself, and simply hoped it would go away.
The emotional pain of OCD isn’t limited to personal, internal obsessions unique to the sufferer. OCD sufferers often become inordinately concerned with external events. In Ed’s case, it was the Persian Gulf War. He listened to reports on television and became consumed with the fear that his brother, Tom, who was serving in the Army, would be called overseas-and killed. While this is a normal concern for any military family, the anxiety it triggered resulted in an exaggerated cycle of obsessive worrying, and a growing compulsion to keep ‘things’ in place-for Ed this resulted in a combination of ‘just right’ obsessions and hoarding-that began to erupt on a greater scale. If, for example, there was a hat sitting atop the television when he heard something on TV that inspired him to feel good-someone had won something, a life had been saved or a film had had an inspirational ending-the hat couldn’t be moved. It had to stay in that place, never to be moved, and as long as it did, nothing bad would happen to Tom.
Contamination fears are probably the most well-known symptom of OCD, and can be triggered when an OCD sufferer encounters illness. For Ed, the obsession with germs fully manifested itself in September of 1993, when the TV movie And the Band Played On, a dramatic story about the evolution of the AIDS crisis, first aired.
Ed acutely remembers this film, as well as an urban legend originating around the same time about a guy in New York City who wakes up after a one-night stand to find, written on his mirror in lipstick, the words, ‘Welcome to the AIDS club.’ This absurd, perverted horror story caused Ed to worry obsessively about contracting HIV. Ed’s OCD mind had equated sex with AIDS, and he began to fear sexual contact. While Ed had never been promiscuous, within a year OCD had turned his decision to practise abstinence until he found the girl he was going to marry into avoidance of all human contact.
Increasingly, OCD altered Ed’s physical reality. Once, when a stranger accidentally bumped into him, he followed him a short distance and carefully manoeuvred a way to gently bump his arm back, without being noticed, so the event could be erased from his mind.
As the manifestation of OCD symptoms increased, Ed became profoundly aware of the physical space around him. If anyone walked behind him, or parked a car behind his car, he would feel trapped-as if bound by an invisible rope that he couldn’t break-preventing him from rewinding his steps and actions so that he could properly ‘erase’ them in time. His older sister Tami recalls that when he rode in her car she would have to park in a place where no one could park behind her, so he would not get ‘trapped’.
And so much as hearing the word ‘death’, or any variation of it, would instantly stunt his thought process and even his ability to move, sending him into a state of sheer panic. His heart would race, he’d get hot flushes, begin to sweat and even struggle to breathe. He’d suffer extreme flashbacks and would instantly be transported back to the night of his mother’s death, which would become as vivid to him as it when he was 11 years old. The only way he could logically and calmly process any variation of the word ‘death’, ‘dead’, or ‘die’ would be to spell them out, or ask others to spell them out, instead of verbalizing them. If someone unaware of this need unwittingly said one of these words, he’d have them repeat it, so it would be ‘erased’. Eventually he came up with a word that he could tolerate for death: ‘freath’.
In January 1993, in spite of the mysterious and ever-increasing symptoms that plagued him, Ed loaded up his car-and his dog, Zeus-and with his father in the driver’s seat, made the 14-hour trip to South Carolina one last time. Ed was desperately unhappy trying to work in construction with his father and deal with the mix of intrusive thoughts, the counting and checking rituals, and the constant worry that plagued him. He hoped the incident at the path on campus had been a fluke and that a change in scenery would do him good. He hoped that being around Rudy and the guys, who had made him feel so welcome, and simply throwing the football around, could perhaps empower him again. Bob was at a total loss as to how to help his son find his way in life, and hoped that going back to Clemson would help.
But the moment his father left and headed to the train station to go back home, after helping him get set up at a local hotel, Ed curled up on his bed. Like so many victims of OCD, he was lost. He didn’t understand how everyone else could be so carefree when his entire world was fraught with worry of every kind. Though Bob was out of sight, he was hardly out of mind, as Ed now believed that he held the key to his father’s life in his every move.
Of course, recapturing the good feeling he’d once had at Clemson was out of the question. He called Rudy, but couldn’t commit to plans that involved leaving the hotel room. He remembers one of the guys from the team, Brad Thompson, stopping by to see him, but he never managed to make his way back to campus. And after spending two weeks mostly watching television, ordering food and taking Zeus outside for brief walks-he packed up his car and went home.
Back at his father’s house, Ed could only motivate himself to work sporadically, and only in so far as he wanted to ensure his father’s safety. He would carry all of the heavy tools and equipment up and down the stairs because he didn’t want to risk Bob getting hurt. His activities became increasingly more limited, to the point where he was staying in the basement watching movies and cartoons and playing video games nearly all the time. When Ed did venture out to someplace like the local mall, one journey would turn into a series of subsequent ones throughout the week, as many as 16 times back and forth, to ‘erase’ the initial journey.
Rewinding and erasing an event made sense to Ed because if one action-whatever it was-moved him forward in time, doing it again precisely kept time in place-in his mind. There is absolutely nothing logical about this way of thinking-and there is no clinical explanation for Ed’s specific rewinding manifestation-but this is how OCD manifested in his mind…his obsession over the number of times something happened was connected to time in his mind…he was compelled to ‘erase’ the event by repeating it-and in performing this ritual he believed this kept time from moving forwards.
Between his last visit to Clemson in 1993 and the summer of 1995 there were periods of time when the severity of Ed’s OCD seemed to wane before rebounding into greater obsessive and compulsive rituals. His brother Tom came home from the service, giving him a greater sense of family and bringing with him a sense of calm and relief. Life was far from perfect for Ed, but now it was at least manageable and ordinary. But OCD was the dark shadow lurking in the corner-it never completely went away-and every time it showed its face it became harder to dismiss.
High school friend Jason Peters recalls a trip with Ed to Emerald Square City Mall in North Attleboro, about an hour and a half from home. Ed seemed fine the whole day, until he accidentally dropped his keys in the mall’s car park as the two were about to head home. When Ed reached down to pick them up, his hand brushed the ground. This started a chain-reaction of touching obsessions, and the need to touch and retouch the car park an even number of times to erase the event.
Ed didn’t want to inconvenience Jason, or embarrass himself, and he fought the desperate urge to continue touching the ground, though he hadn’t reached that