One fall day in 1987, Joan decided to check the bathroom plumbing.
The pipe leading to the toilet had been leaking slightly. For some reason that she herself did not understand, this bothered Joan. A lot.
She went to her bedroom upstairs in the family’s neat bilevel in the south suburbs, took the shoes out of the closet, opened the access door to the bathroom pipes and checked for leaks.
But she had no sooner closed the access door and put the shoes back in the closet before she was enveloped by doubt.
Yes, the pipes had looked and felt dry. But were they really?
She took the shoes out of the closet, opened the access door and checked again.
Again the doubt returned. She checked again. And again. And as the weeks and then months passed, again and again and again and again and again.
The plumbing was the beginning. Her fears spread through the house like smoke. She became convinced that the house’s foundation was collapsing, that the driveway was disintegrating, that an addition to the house was peeling away. It seemed to her that the entire building was on the verge of crumbling.
But it was Joan who was crumbling.
She began spending hours every day examining the foundation and walls.
“I would go into the crawl space an and pull back the blown-in insulation,” she said. “When the weather broke, I was outside, digging in the dirt like a dog.
“She would come in with her arms all scratched and dirt in her nails,” said her husband, James. “She would get cut up going through the bushes on her hands and knees.”
James and the children, then 12, 16 and 17, went around the house with her, reassuring her that the house was fine.
“We once had to go out and measure the distance between the (pieces of) siding to show her it was straight,” James said.
It was useless. Joan stopped opening and closing windows out of fear that the movement would disturb the house. She took to sleeping on the floor of her daughter’s room, the farthest corner of the house, in a futile attempt to escape the center of the house that seemed to be destroying her.
She was so afraid of the driveway crumbling that she sometimes vomited after driving into the garage.
Though horrified and humiliated by her actions, she was powerless to stop.
“These grotesque images bombard you; you just can’t control your thoughts,” she said. “There wasn’t a letup, from the minute I opened my eyes in the morning. And when I left the house, it followed me.”
Though she didn’t know it at the time, she was beginning a two-year battle with obsessive-compulsive disorder.
It is a disease of bizarre and unique torment. Sufferers are bombarded by irrational, sometimes horrific thoughts. They may think they are being contaminated by germs and thus wash their hands incessantly, that they have run someone over with their car, that their normal thoughts are blasphemous. One psychologist recalled a patient who became convinced that her house had flipped over, then righted itself.
Some people count to a certain number every time they walk up the stairs, or arrange objects with precise symmetry.
In one of the most agonizing forms of the illness, victims imagine that they will hurt or kill someone they love.
The suburban manager of a manufacturing firm, for example, pictured himself randomly committing murders.
“I would have horrific images of stabbing people, usually in the chest,” he said.
He lived with the bizarre symptoms for years, until he married and had a child — and began picturing himself stabbing his newborn baby daughter to death.
“It’s devastating,” he said. “Clearly, I knew I didn’t want to do this. Yet not being able to control the thought scared the living hell out of me. It snowballs; the harder you try not to think about not stabbing your daughter, the greater the anxiety and the more the thought returns.”
The man, who asked to be identified only by his first name, Brian, was helped by behavior therapy and by the assurance that obsessive-compulsive patients never, in fact, commit the acts of violence they imagine. He now leads an obsessive-compulsive-disorder support group on the North Shore.
Whatever the obsessive thoughts, they come back uncontrollably, like a tic of the mind. Dr. Judith Rapoport, chief of the Child Psychiatry Branch at the National Institute of Mental Health and the pioneer of drug therapy for the disease in the U.S., has described obsessive-compulsive disorder as a sort of brain hiccup.
And while the disease was long attributed to childhood trauma or punitive toilet training, it has now been established as having a biological basis.
The disease is a neurological glitch possibly caused by mental “sparks” or short circuits of electrical activity in the brain, Rapoport has written.
Some sufferers find that the disease begins, or recurs, in times of stress. Joan, for example, had been terrified about her family’s finances; her husband had lost his job as a real estate manager at a downtown bank three years earlier, and she had not worked since she quit her job as a teacher when their first child was born.
Once thought to be rare and hopeless, obsessive-compulsive disorder is anything but. It is among the most common mental illnesses, affecting about 2.5 percent of the U.S. population. It occurs nearly twice as often as schizophrenia. Rapoport estimates that between two million and four million Americans may suffer from the disease.
It affects children and adults; the average age of onset is 20. It affects both men and women, but there seems to be some gender link: Among children, it is twice as common among boys, while among adults, 55 percent of victims are women. Studies have found that women are more susceptible right after they have had a child.
And although traditional psychotherapy is notoriously unhelpful, obsessive-compulsive disorder has proved treatable with medication, behavior therapy or, ideally, a combination of the two. Few patients are permanently cured, but as many as 90 percent get some relief.
The drugs increase the amount of the neurotransmitter serotonin available in the synapses between brain cells. Neurotransmitters are the chemicals that allow nerve cells to communicate with each other.
The other equally powerful weapon in the arsenal against the disease is a behavioral treatment called exposure-response therapy: Patients are exposed to the very thing they fear most, then asked to refrain from the ritual that gives them a moment’s relief.
They soon learn that the anxiety they are trying to fend off with compulsive rituals will subside on its own, said psychologist John Calamari, director of the Anxiety Treatment Program at Finch University of Health Sciences/the Chicago Medical School in North Chicago.
The prospect of such treatment is so terrifying, however, that fewer than half of those patients referred for behavioral therapy complete it.
“It felt like a nightmare,” said Susan Richman, a sufferer of contamination obsessions who is co-founder and president of the Obsessive Compulsive Foundation of Metropolitan Chicago.
She spent three weeks touching toilets, peepshow coin slots and dead birds without washing, under the guidance of the Behavior Therapy Program at the Medical College of Pennsylvania in Philadelphia.
“I know it sounds really disgusting, but it really works,” she said. “I went from being completely dysfunctional to being myself again.”
The technique is particularly gruesome for sufferers of harming obsessions.
“I had to write a script on how I would murder my wife and daughter,” said Brian. “I had to be as graphic as I possibly could, and read it over and over again, to the point where I was just neutralizing myself to it.
“And I had to make a cassette tape talking about and describing graphic, horrific scenes of stabbing loved ones and lopping the heads off perfect strangers,” he said. “It got to be funny. I was fortunate; humor plays a big role in recovery.”
While the precise mechanism of obsessive-compulsive disorder is unknown, researchers have located the part of the brain affected.
Using brain scans, Dr. Lewis Baxter, a psychiatrist at the UCLA School of Medicine, has shown that the undersurface of the front part of the brain — the orbital prefrontal cortex, right above the eyes — is extremely active in obsessive-compulsive patients.
The cortex is connected to the basal ganglia, structures deep inside the brain that act as relay stations between the cortex and our senses and impulses to move. In obsessive-compulsive patients, Baxter said, the basal ganglia seem to form a high-activity repeating circuit with the orbital cortex. Treatment breaks up the circuit, he said.
In severe cases where patients respond to neither drugs nor behavior therapy, neurosurgeons at a few medical centers create small, precise lesions in the brain that seem to interrupt the circuits. There are only minimal side effects, and there is some improvement in 30 to 40 percent of these difficult cases.
As the disease can be seen with brain scans, so can the treatment. After treatment with either drugs or behavioral therapy, Baxter said, the superactivity in the orbital prefrontal cortex dies down.
The cause of the illness is unknown. There may be many types of obsessive-compulsive disorder with many different causes, said Dr. Susan Swedo, head of behavioral pediatrics at the National Institute of Mental Health.
There is evidence of genetic predisposition to some forms of the disease. There are connections with other diseases of the basal ganglia such as Huntington’s chorea, Sydenham’s chorea, Parkinson’s disease and Tourette’s syndrome.
Swedo’s research has found that some people develop obsessive-compulsive disorder after a strep infection.
For Joan, the cause mattered less than knowing what was wrong.
She didn’t even have a name for her five months of torment, until one day when her daughter followed her outside where she was digging in the dirt and said, “Mom, stop it.”
“The two of us looked at each other,” Joan said. “We walked to my next-door neighbor’s house. I just looked at her and started crying. I said, `Mary Ann, I’m sick.’ “
Her neighbor was a psychiatric nurse. She told Joan she thought she was obsessive compulsive and referred her to a community mental health center.
But Joan spent the next seven months in therapy with a social worker who delved into her feelings about her parents and her ability to express emotion.
It didn’t help. The therapeutic relationship soured and finally ended with the social worker’s recommending a different therapist.
Joan was too depressed to consult someone else. And her husband and children were exhausted.
“It was driving me crazy,” said her daughter, the oldest child, now 24. “No matter how many times I told her, `You don’t have to worry; everything’s OK,’ it didn’t matter. She just couldn’t help herself.”
Moreover, Joan seemed so depressed that her daughter was sometimes afraid to leave her alone.
“I started following her around the house,” she said. “I was afraid she was going to end up killing herself.”
In fact, Joan was in such agony that she did consider suicide. In retrospect, she sees herself as having sunk lower than a dog, for at least a dog can control its actions.
Relief came from TV: Her daughter happened to see Rapaport on “Oprah,” talking about her book “The Boy Who Couldn’t Stop Washing,” (NAL-Dutton, $9.95), which has become a bible for obsessive-compulsive sufferers.
Joan watched the rebroadcast, bought the book, returned to the mental health center and asked to see a psychiatrist to be given Prozac, one of the drugs that affects serotonin and helps relieve obsessive-compulsive disorder.
Two weeks after she began the medication, the cloud started to lift. The thoughts seemed to come less frequently; the urge to check the foundation loosened.
After two months, her fears about the house were essentially gone. On a calendar, she kept track of her progress. On March 25, 1989, she opened a window.
“I was very careful,” she said. “It took me a long time before I vacuumed the house again. I didn’t want anything to set it off.”
After 10 months, she felt so good that she decided to try stopping the medication to see if the symptoms returned. They didn’t.
Four years later, Joan wrote a 230-page manuscript describing her descent into and ascent from hell, which she hopes to get published.
“When I completed that, I was able to put it all behind me,” she said.
It was an unusual recovery for obsessive-compulsive disorder. She was able to go off medication, and she has not had a relapse. Joan now teaches English at a suburban high school but is so concerned that coworkers will not understand her illness that she did not want her last name used.
She is still cautious, she says, when stress arises.
“It’s like if you break a leg, you always favor that leg,” she said.
Life is different in another, better way.
“As when one with the gift of sight loses it for a period of time and then regains it,” she wrote in her manuscript, “is the world not more beautiful than ever before?”
To the researcher Rapoport, obsessive-compulsive disorder has profound philosophical implications: If a neurological glitch can cause people to doubt their senses, she wrote in her book, is knowledge itself a matter of biology?
In unraveling what happens in obsessive-compulsive disorder, she suggested, “we will also learn more about the most mysterious secrets of the nature of man.”
For more information, contact the Obsessive Compulsive Foundation of Metropolitan Chicago, 312-880-2035, or the Obsessive Compulsive Information Center in Madison, Wis., 608-836-8070.
Obsessive-compulsive behavior
– Having a tendency to perform certain repetitive or ritualistic acts to relieve anxiety.
– Among the most common mental illnesses, affecting 2.5 percent of the population. It occurs nearly twice as often as schizophrenia.
– “This is a disorder of rational irrationality. People know what they do is crazy; they hate having to do it.” – Dr. Susan Swedo, head of behavioral pediatric at the National Institute of Health
