Triumphing Over Obsessive Compulsive Disorder

April 14, 2009 -- For individuals suffering from Obsessive Compulsive Disorder (OCD), even completing the smallest of tasks can be a painstaking ordeal. Unassuming aspects of daily life, from tying one's shoes to preparing breakfast, are often a struggle for those faced with this isolating illness.

"Life in Rewind" is the inspirational story of Edward E. Zine's triumphant hurdle over his own OCD, afflicted since witnessing the death of his mother as a child. Written by Zine along with Michael A. Jenike, M.D., the Harvard doctor who helped him persevere, and Terry Weible Murphy, "Life in Rewind" lends a voice to the world of OCD sufferers. Read an excerpt below.

Check out the Obsessive Compulsive Foundation for more information on resources available to people with OCD.

Excerpt

The piece of lint has been missing for nearly a week. Before its sudden disappearance, it lay coupledwith the wilted brown leaf on the basement floor near the back door. Its absence is devastating.

Finally, at the end of a long, tedious search, the particle of fluff is discovered, attached to the delicate hind leg of a cricket that has found its way indoors during the rainy season. The exorcism of lint is done with great care, leaving the cricket unharmed.

But reconstructing the comfortable universe where the piece of lint once existed with the brittle leaf takes many anguish-filled hours to complete.

Michael Jenike knows nothing of this as he dribbles the basketball and pushes through the sweaty bodies of the other players barreling toward him, their rubber soles squeaking against the gym floor as he defends his turf. The tired, but enthusiastic grunts of grown men meld with the pounding rhythm of the ball slamming against their hands, and briefly, they are able to recapture the carefree satisfaction that belonged to them on thebasketball courts of their youth.

After the game, adrenaline still pumping, Michael drops his gym bag into the back of his new BMW-Z3, slides his sixfeet, two-inch frame behind the wheel, cranks up some country music, and pushes the speed limit down Route 3 toward Cape Cod where, on this spring day in 1996, his life will intersect with a seemingly impenetrable boundary, and he will be forced to confront pieces of his own painful past.

At the same time, the young man who meticulously extracted the piece of lint from the leg of the cricket sits in the basement of a modest raised-ranch house, in a wooded, middle-class neighborhood on the coast of Cape Cod, Massachusetts. He can't get out, and he refuses to let anyone in. The seasons have changed, schoolchildren who board the bus outside his door have been promoted from one grade to the next, and each day, strangers pass by without giving a moment's thought to what's happening behind the closed door at the bottom of the thirteen steps on the side of the quiet house.

Isolated from friends who think he's away at college, he sits on the end of his bed, rocking back and forth, helplessly performing repetitive rituals of forward and backward counting, all multiples of even numbers that stretch well into the tens of thousands. The cable television guide that rolls on the screen in front of him is his only gauge for the time that passes, as he sits with his hands outstretched from his body, fingers spread, locked into position like the claws of an eagle, while his mind rages with the repetitive pounding of a terrible equation that will not let him go.

Time equals Progression, Progression equals Death. This is the mantra that keeps twenty-four-year-old Ed Zine living on the end of a mental tether with invisible strands attached to every muscle, thought, and spoken word. This tether is his safety net, rewinding and erasing every action that would otherwise propel him forward in time. When the rewind is complete, he is given momentary relief from the anxiety of the equation with which he is so preoccupied.

Ed's obsession is logic gone completely awry. Although it's true that the time line of our lives follows this sequence of Time equals Progression, Progression equals Death, few of us ever scrutinize each moment and each movement as a path to our certain end. Surely, such torture would drive us mad. For Ed, who suffers from severe obsessive-compulsive disorder, the perpetual rewinding is a ritual; more aptly, a series of rituals within rituals, which temporarily relieves the madness his intrusive thoughts create.

Assaulted by this logical, but paralyzing notion, his illogical mind creates a battle that rages within him every second of every day. Early in the day, Ed began moving from the end of his bed toward the basement door in anticipation of Michael Jenike's arrival.

It is a daunting task that takes him nearly seven hours to complete, and all the while he wonders if this is the one person who will release him from this personal hell.

Dr. Michael Jenike is a professor of psychiatry at Harvard Medical School and one of the world's leading experts in the research and treatment of obsessive-compulsive disorder. He describes OCD as a disorder of "pure suffering," and he brings to its treatment not only an extraordinary scientific mind, but also a profound depth of compassion for his patients. The message from his secretary is simple: a young man is stuck in his basement and needs help. She knows that Michael's already busy schedule doesn't really allow him to take a full day to see a new patient, but she also knows that nothing she says will stop him from going. Someone is trapped, and that's really all Michael needs to know as he pushes his own life clock forward, driving almost three hours to meet his new patient.

After a brief introduction to the Zine family -- who are gathered on the front lawn to greet him, amazed that he has come all this way to respond to their call for help -- Michael walks slowly up the driveway along the washed-out gray privacy fence as tentatively as he might test the ice of a newly frozen pond. He cannot see his new patient standing inside the basement at the bottom of the steps, but he does hear the instructions being issued through a small six-inch opening in the door. Ed will not allow Michael into the basement, nor will he allow him to walk into the twentyfoot perimeter outside the basement door, which he describes as his "OCD Holy Ground." Before Michael can even breech that perimeter, he is asked to stop.

Michael's goal this day is to simply start by building an alliance with Ed. "A lot of times, when people are stuck, they have all kinds of rituals that they're afraid you're going to interfere with," he says, "so you have to find out what world they're living in, and join it for a while. I wanted to be cautious, listen to what his rules were, and try not to violate them."

If Michael moves too quickly, or changes the placement of even the smallest leaf in Ed's OCD Holy Ground, there is little hope for an alliance because it will have upended Ed's entiresacred universe, setting in motion a series of physical and mental rituals to rewind and secure the placement of the leaf to its original state, just as he did with the lint that the cricket moved. "The lint and the leaf gave me solace," Ed recalls. "Keeping my world exactly as it was kept that good feeling in place. I felt like, right there, everything was comfortable, and nothing bad was going tohappen to anybody. When the lint moved, I lost control of time and events."

Clearly, human contact of any kind is excruciatingly painful for Ed. "It changed everything in my world, and it was physically painful to me," says Ed. "I couldn't bear to have anything around me touched or moved." This was the prelude to Ed's isolation, his inability to allow anyone near him who might brush up against him or move the possessions that had become the placekeepers of happy moments in time.

But almost immediately, Ed senses in Michael a level of care and respect for his pain that he's not felt from other medical professionals he's encountered. "Dr. Jenike had the presence of mind not to invade the grounds which were, to me, so unstained. At the same time, though, I had to let him know what the parameters were. I couldn't let him inside. I had to tell him, 'I don't feel comfortable, and you have to stay there.' "

Michael takes a seat on the ground and gently begins to build on that tiny fraction of trust. Even from this distance, talking through a closed door, he is able to evaluate the depth of Ed's disorder without ever setting eyes on him. Ed exhibits classic signs of severe OCD—intrusive thoughts, repetitive counting and checking, contamination issues, and hoarding. But Michael discovers another alarming distinction in the way OCD holds his new patient captive. Ed Zine believes through his strict regimen of rituals—which is essentially organized chaos—he can stop the progression of time.

Ed's OCD mind has convinced him that by reversing every action, he can alter the equation of Time equals Progression, Progression equals Death. He figures that if he can protect his time and space by reversing the actions, and if he can, in his own mind, erase events, as if they had never happened, he will be able to prevent time from moving forward and all those people he loves will remain young, healthy, and ... alive. It is never about protecting himself from death, it is always about others.

The madness of OCD is that while the irrational mind is operating, its victim is able to observe and recognize this behavior. It is a neurologically based anxiety disorder with symptoms that often look "crazy" to outside observers, but the sufferer isn't crazy at all.

Individuals who suffer with OCD know that their illogical behavior has no logical basis, and knowing this increases their suffering all the more, because without treatment they are unable to stop it. Imagine Ed as a child standing on the shore watching the other kids swim and play without a care in the world. He wants nothing more than to jump in and splash around in the "normal" waters that beckon him from just a few feet away, but his swim trunks are covered by layers of winter clothing. He knows it makes absolutely no sense that he's wearing winter clothing on a hot summer day, but he is incapable of shedding his woolen wear to get down to the layers of cotton clothing that make sense forsummer and swimming.

Multiple layers of simultaneous thought are occurring at lightning speed in the narrow partition between Ed's logical and illogical minds as he monitors his physical and mental activity. During the seven-hour journey from his bed to the door leading outside where Michael now sits trying to get to know him, Ed's brain continuously scans his physical environment for changes, information downloaded from television, and dialogue with members of his family who drop off food outside the basement door, checking and rechecking his mechanisms for holding time in its place hundreds and thousands of times. The fifteen-foot trip across the room is an excruciating testament to this process: Right foot forward, left foot, right foot forward, left ... a truck passes by . . . freeze. Left foot still in air, hold perfectly still for one and a half hours and wait for another truck to pass by that sounds exactly the same. With conditions now perfect, reverse process, and go backward to starting place to do it all over from beginning. Left foot down, step backward in same exact spot, now right foot backward, left . . . no.

Stop. The fingers of your right hand touched. Freeze. Count in multiples of even numbers all the way to 16,384, and back, touching and untouching your fingers dozens of times to fix mistake. Move your feet into exact position they were in when your fingers touched, then reverse all moves back to spot where truck passed by. Wait. Keep fingers locked so they don't touch. Freeze. Wait fifteen more minutes until another truck passes by. Start again. Right, left, right, left. Was big toe on right foot pointed in exact position for second step as it was for first? No. Go backward. Freeze. Wait. Does everything feel right? Okay, start again. A dog barks. Freeze. Wait until dog barks, again. . . .

In much the same way one describes an out-of-body experience, Ed has watched himself descend into this extraordinary underground life in his father's basement where his mind holds him hostage. It' s possible that one of the most effective tools in Michael Jenike's medical kit is his disarming sense of humor. Still,he is surprised to find that Ed, as sick as he is, responds, albeitweakly, to Michael's self-effacing jokes, and he has his ownsense of humor, too. After hours of talking through the basementdoor, Ed begins to feel slightly more comfortable—not comfortableenough to let the doctor into the basement, but comfortableenough to consider meeting him face-to-face in the upper levelof the house. Michael is given instructions to follow as he comesaround the front of the house through the main door, turning thehandle back and forth repeatedly, ending on an even number,because odd numbers are bad, and opening and closing the dooran even number of times, too, before coming inside. Michaelmust wait for a considerable period of time as Ed struggles upthe few wooden steps, stopping and starting, going forward andbackward, as he counts in multiples of even numbers to 16,384.Ed is ashamed of the way he looks, and agreeing to come upstairscreates added layers of anxiety that result in more counting, andmore repeating of his steps.

Just four years earlier, Ed was a tall, good-looking athlete, whowas determined to try out as a walk-on for the Clemson Universityfootball team. It was a long shot of a dream for the lanky kidwith an undistinguished high school playing career, but he hada powerful throwing arm and had managed to get the attentionof one of the team's coaches. He took classes at the local community college and worked out every night at the gym to build his strength and develop his body, but the version of Ed Zine whoemerges from the basement is someone completely different—atleast in appearance Michael tries to catch his breath. The stench of body waste and rot come back to him from another place and time. Flashbacks and nausea consume him. From the stairwell below, a rancid breeze blows through the air, emanating from piles of human feces stored in Ziploc bags, meshed with the odor of dozens of Gatorade bottles overflowing with ripe urine. But that is only part of the sickening smell. The frail, hunched-over shadow walking up the stairs, forward and backward, has not showered, shaved, or brushed his teeth in nearly a year. Ed's eyes are squinted shut from the sudden exposure to bright light, and his long, curly hair is matted against his crusted scalp, sticking out in every direction.

Pale and undernourished, he drowns in his dirty white T-shirtand gray sweatpants, neither of which he's changed for months.Fighting the urge to vomit, Michael tries to reconcile thesight and smell of this desperately ill young man covered in bedsores, who seems more akin to a wild, injured animal emerging from its den than the gentle, respectful young man he's spentthe last few hours getting to know. Obsessive-compulsive disorderhas completely stripped Ed of his dignity and of the basic abilityto cleanse his body and put on clean clothes.

Ed makes his way to the family room, and for brief periodsduring this conversation, he suddenly disengages and goes intosome kind of trance, mouthing words silently to himself. The interruptions are brought on by his need to repeat his spoken words backward several times, until he meets a perfect rewind andachieves the final even number of repetitions. Incredibly, Ed Zinehas taught himself to read and speak backward. He has masteredperfect English, in reverse. His fluency is extraordinary. He canread this sentence as quickly backward as he can forward..drawrof nac eh sa drawkcab ylkciuq sa ecnetnes siht daer nac eHThe obsession to stop the progression of time and the thousandsupon thousands of resulting rituals have turned Ed's mindinto a photographic and audiological masterpiece trained on therelentless pursuit of perfection.

Ed and Michael are engaged in a two-way psychological assessment.

While Ed is continuing his silent rituals, he is alsoactively analyzing Michael. He is very wary of anyone new. Recently, he suffered what he feels was a betrayal by his family who had assumed, incorrectly (and quite ironically), that he was a suicide risk and had him committed to the local psychiatric hospital.As much as he wants help to get his life back, he does not wantsomeone who is going to demand his trust; he needs someonehe can believe in. According to Ed, there's a critical distinction."Believing in somebody means that they give you the ability andhave the faith that you can make your decisions along the way.When we got upstairs and really talked, it hit me, 'BOO M,' this issomeone I can really believe in."

In the living room that day, the conversation between doctorand patient did not focus on OCD—there was no need, Ed alreadyknew his diagnosis. Instead, it was an afternoon of relationshipbuilding, as Ed shared with Michael the details of hissolitary life. He sprinkles the conversation with questions to hisnew doctor. Is he married? Does he have children? Ed talks abouthis recent hospitalization, and honor—one of his favorite subjects—and he discovers that Michael is a war veteran, a pilot who served in the air force in Vietnam. In all of this, there is nothing about Michael's presence that says, "I'm the doctor, you're the patient."

But he is the doctor, and with that he has brought all the yearsof his considerable experience to bear in that meeting, and he hasnever seen anyone with OCD this severe. "Ed was very sick, andreally stuck. He was so trapped in circular thinking, there wasno angle that could be used to help him." But on this first day,Michael hasn't come to see Ed with a big game plan in mind; heis there to make an assessment, form an alliance, and determinewhether Ed is able to come to the Obsessive Compulsive DisorderInstitute at McLean Hospital for residential treatment. But it isclear that such a move is not possible.

At the end of the day, Michael knows that although Ed wantsto get well, "he wasn't going to move for anybody else's ideas andthoughts other than his own. I hoped if we got to know one another better, and tried some medicine and behavioral therapy, we could get him out of there."

If anyone can help Ed, it is Michael. He has the best skilland experience that medicine has to offer, but over the course ofthe next year, he will discover there are no easy answers. He willwatch helplessly as his young patient spirals deeper and deeperinto his own mind, haunted by that echoing equation, Time equalsProgression, Progression equals Death, and the ever-increasing rituals OCD demands of him. Ed will eventually stop wearing clothes altogether and spend most of his time sitting undressed on the end of his bed watching television, rewinding movies backwardand forward, while the unwashed sheets oxidize to a shimmeringgreen slime from the filth of body oils and droppings of food.Helping Ed will prove Michael's biggest challenge in twentyyears of treating some of the most extreme documented cases ofOCD.

In spite of what would become his growing belief that Edmight never get better, and would most likely spend the rest of hislife living in the basement of his father's home, Michael wouldcontinue his visits, driving the distance between Boston and CapeCod over and over because he knew that no one else would, andhe understood his presence mattered in the life of a human beingwho was suffering inconceivable anguish. He recognized all ofthe deep, dark feelings that can trap a human mind, for CaptainMichael Jenike, an honored war hero and recipient of the Distinguished Flying Cross, had also known such depths of despair.

Michael would find himself lost in the hopelessness of Ed'ssituation. At the end of each visit, he would drive a short distancedown the road, pull his car off to the side, turn on the flashers,and cry. It would be a long time before he would realize that deepwithin him, he possessed everything he needed to lead his patientto a place where the healing process could begin.