Small Worlds: The Hidden Lives of Agoraphobics

Emily Dickinson has always been an agoraphobic ideal. From her late thirties until her death, the 19th century poet never left her father’s property. Dickinson is said to have spoken with visitors through her bedroom door, or from around a corner at the top of the stairs. Some say she lowered baskets of gingerbread from her window to the children below, careful not to show her face. We imagine this gentle soul, in the white dress that she insisted on wearing every day, as the characteristic victim of this peculiar illness.

For most people agoraphobia conjures an image of someone who strangely cannot exit his or her own home. For mental health professionals, however, it is the illness of those who walk into their office with complaints of panicky feelings when they head to work, walk alone at night, or travel from their hometown. The truth is, despite the popular use of the word both casually and in the clinic, even the experts are confused about it.

“I think if you speak to 50 people in the field, twenty-five will say ‘a-GOR-aphobia’ and 25 will say ‘AG-oraphobia,’” says Jerilyn Ross, president of the Anxiety Disorders Association of America.

Fancying the lore of Emily Dickinson, one might expect therapists who treat the disease to regale them with stories of elderly folk who had been trapped in their apartments for decades, or young geniuses who quietly created works of art among the clutter of hoarded scraps and oddball collections that they never left. But when I asked about homebound agoraphobics, many of the therapists and researchers I spoke with implied that this was a mostly romanticized notion of the illness. They felt that it was the extraordinary, extremely rare case.

“The definition I usually use,” says Ross, “is that agoraphobia is a fear of having a panic attack in places where escape is impossible. Left alone, if the person keeps avoiding the places where they think they’ll have the attack, in the worst-case scenario they can end up becoming completely housebound. Now, that’s more the exception than the norm.”

*

In the working-class neighborhood of East Boston, where Jennifer S. lives, the wind is whipping off the Massachusetts Bay and the temperature is 15 degrees. I have been standing on the sidewalk in front of Jennifer’s pale green row house for nearly ten minutes, and my mouth is so numb from the cold air that my words are slurred. Jennifer is sitting on a red bicycle, motionless, and doesn’t seem to notice the freezing air. She is distracted. Her heart is pounding. She asks me to touch her neck to feel her pulse. “Right now, everything’s all blurry,” she says. This is the time of day when she must force herself to walk her bicycle down to the corner, half a block away. Jennifer is agoraphobic, and every day, on her own, she tries to do something about it. Even in pouring rain, she leaves her home sometime between 2 and 4 o’clock each afternoon and walks until she can go no further, until she feels as if she might die. On one occasion, she forced herself to keep going a few extra feet and panicked so badly that in her scramble to get back to her front door she bashed her head on a first-floor air conditioner. She bled for 36 hours, and still has a scar where her hair will not grow, because she couldn’t leave her home to get stitches.

Yet, as we stand waiting while she gets up her nerve, Jennifer’s face seems calm. She is husky but fit, wearing an eggplant-colored corduroy jacket and black stretch pants. Wire-framed sunglasses sit above black, overgrown bangs and thin eyes heavy with dark eyeliner, her only make-up. When she speaks, she speaks in a monotone. Jennifer, who is 28, lives with Ken, her husband of nine years, and Tootsie, a freakishly fat half-chihauhau, half-Jack Russell terrier. She is a self-taught web designer, and the 15 or so sites that she has fashioned are bordered with clip art depicting unicorns, American eagles, and cats. For a while, she attempted to run an on-line gift store, the Trinity Shop, selling Christian merchandise and feminine knick-knacks. “Anything non-violent,” she says.

Two months ago Jennifer made it all the way to a corner grocery store for the first time.   She keeps an instant-win lottery ticket as a souvenir of the accomplishment.   A year ago she could not exit her front door.  As the cold seeps into my bones and I begin to suspect that we are going nowhere, Jennifer finally says, “Well, no time like the present.”

Straddling her bicycle, she begins pushing herself along the sidewalk with her feet, her hands clutching the handlebars. Leaving home makes her dizzy, and she feels better if she is grounded and supported by the bicycle beneath her. She chats about times when her agoraphobia was much worse. “There was a point where I would just sit on the floor. I couldn’t even sit on the couch, because the anxiety and the dizziness would be so bad. If you’re sitting on the floor, you can’t fall.” Jennifer says that she has had panic attacks since she was fourteen, and has been housebound since April 26, 1996, two years into her marriage. In 2001, her doctor told her that, due to budget cuts, he could no longer make house calls, and could not write her prescriptions for medication if she did not come in to get them. Since then she has had no medication, and only receives limited therapy from a local organization, Phobics United.

She pulls out a small digital camera and snaps in the direction of the street, capturing a parked car and some pavement. Then she snaps at a neighbor’s door. “I’ve got 445 days of pictures on my computer,” she says. She will look at the pictures later, to remind herself of how well she did today. She will send the pictures to her agoraphobic friends across the country with whom she exchanges E-mails of encouragement.

She starts coughing, which means that she is choking slightly — a common symptom of panic attacks. I ask her how she is feeling. “I usually try not to talk about my symptoms when I have them,” she says dryly. At the corner, she hands me the camera, and asks me to take her picture as she poses before the entrance of Dolphin Tackle & Bait. “Okay, well, head back that way,” she says, “before I have a full-blown.” She coasts back to her apartment at a deliberately slow pace, fighting the urge to rush to safety.

When we reach her front steps, her husband, a big, tall, clean-cut guy, who remodels kitchens and bathrooms for a living, comes out to check on her. Ken talks congenially about his wife’s illness. “Somebody who doesn’t have it can’t really totally understand it,” he says. “So I don’t understand it sometimes.”

Last Christmas Ken’s brother, with a few drinks in him, got belligerent about the situation. He told Jennifer that she should get a job, that his brother shouldn’t have to do all of the work. Their family and friends get upset because they always have to come to Jennifer and Ken’s home if they want to see them. People who knew Jennifer when she was younger and able to get around now feel snubbed. “We’ve lost a lot of friends,” Ken says. “Basically we don’t have a social life.” He quickly adds, “I’m not one for big social gatherings anyway.”

When Jennifer and Ken were first married, they went to New York City and climbed the Empire State Building. They flew in airplanes. Jennifer was on the dean’s list in college, where she was studying to be a paralegal. But her earliest panic attacks caused her to drop out of college. Her world — and Ken’s world — has been closing in on itself ever since.

“We always say to people, there could be a million dollars down the street from the house,” Ken says, “but if she’d have to go get it herself, she’d have to give up the money. There’s no way she could do it.”

“But a year ago, if you had told me it was past this tree,” Jennifer adds, pointing to the curb right in front of the door to their home, “it would have sat there.”

*

In the relatively short history of the science of psychiatry, agoraphobia was one of the first phobias ever named, possibly second only to “hydrophobia,” soon followed by “claustrophobia,” and then an avalanche of phobic prefixes. When the German physician Carl Westphal coined the term in 1871, he wrote three case studies of men who were seized with anxiety if confronted with a wide-open space, such as a field or a town square. (“Agoraphobia” translates from the Greek as “fear of the marketplace.”) Early conjectures about the cause included sexual and alcoholic excess, overwork, eating too much meat, bad eyesight, depression, and heredity. Freud, characteristically, maintained that agoraphobia in women was born of the “repression of the intention to take the first man one meets in the street; envy of prostitutes,” although he also surmised with prescience that it had something to do with panic attacks.

This concept was somehow lost for much of the 20th century, when agoraphobia was considered a free-floating fear, seemingly without a source. Despite the fact that most diagnosed agoraphobics before World War I were urban-dwelling men, by the 1950s popular culture personified the agoraphobic as the overly dependent suburban housewife, homebound and helpless. In 1978, the researchers Alan Goldstein and Dianne Chambless of Temple University published highly influential studies that redefined agoraphobia as a “fear of fear” due to panic attacks. Since then the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revised (commonly referred to as the DSM-IV-TR), the diagnostic bible of psychiatry, has cited panic attacks as the essential element in agoraphobia. Even in the DSM’s diagnosis “agoraphobia without history of panic disorder,” the criteria require that it be related to the fear of developing panic-like symptoms.

Diagnosing a true agoraphobic seems to depend somewhat on the eye of the diagnosing beholder. Some therapists see high functioning patients who are afraid to ride the subway or need to hold a “safety object” when they go over bridges and call them agoraphobic. Others would say these patients simply have “specific phobias.” Some insist agoraphobia refers only to someone who has limited their territory to a mile, a block, or their front door.

Laszlo Papp, director of the Biological Studies Unit at New York State Psychiatric Institute, believes that agoraphobia is simply a phase of a broader diagnosis: the illness generally known as panic disorder. Twenty million people in this country suffer from panic attacks. “Agoraphobia is the end stage of the disease, when they really cannot leave their houses anymore,” Papp says. “The most severe cases.”  But Papp acknowledges that the current thinking on the illness is controversial. “For some reason, the British and the Europeans swear that they see a whole bunch of people who are agoraphobic but never have panic attacks,” he says.

No one is absolutely certain how a panic attack works. “It’s kind of a cascade of events,” says Papp. “An autonomic storm in the brain. It causes hyperventilation, increased palpitation of the heart. The blood pressure goes up, there is catastrophic thinking, sweating, and gastrointestinal upset. Some experience choking, some respiratory symptoms, some have inner ear problems, like vertigo.” Basically, the person experiences everything one might feel at the height of horror. He may feel like running away, or freezing, or even fighting. It is the brain sending a false alarm for extreme danger.

“It’s like a tiger walked into the room,” says John Bush, a cognitive behavioral therapist who has been in private practice in Brooklyn, New York for about 20 years. Bush has experienced panic attacks himself. “Terror. You just feel absolutely terrified. It’s hard to believe that such a dramatic experience would come out of thin air.”

Despite its prevalence and drama, panic disorder has not quite taken on the celebrity of illnesses such as depression and obsessive-compulsion, and so its often-spontaneous manifestation usually takes sufferers by surprise. There are estimates that one third of the people who rush to the emergency room complaining of a heart attack are actually having a panic attack. And like a Pavlovian shock to the system, some sufferers of panic attacks are so traumatized by the experience that they will do anything to avoid situations where it might recur, especially in public.

“I think the interesting part of it is that you can look like you are functioning fine,” says Lata McGinn, an associate professor of psychology at the Albert Einstein School of Medicine, who directs a program for anxiety and depression at Yeshiva University. Many of her patients are diagnosed as agoraphobic. “There are people who may be successful financially, but they can’t take a subway on their own, they can’t go for a drive,” she says. “I think that’s probably what you see commonly.”

Scott Woods, an associate professor of psychiatry and director of the Anxiety Research Clinic at Yale University, agrees that the isolated shut-in that most of us imagine when we picture an agoraphobic is the exceptional case. “Patients tend to go for help more frequently now, and therefore don’t become so severely impaired,” he says. “I’d say that since the 1980’s, we’ve had more effective medication treatments than we used to have, and those are accessible to more people.” He adds, “Most people who are homebound can go out, particularly in the company of a spouse or family member. Most of them can make it out to get to the doctor’s. It is a very small minority that actually cannot go out no matter what.”

*

Sandy Weckstein is 66 years old, but cigarettes have ravaged her vocal chords, and her deep, sandpapery voice makes her sound thirty years older. She is very happy to talk about her agoraphobia on the telephone, but will not let me come interview her at her condominium, in Hamden, Connecticut, which she shares with her adult daughter Jodi. She tells me that only a few close friends and relatives are allowed to visit.

“We moved right after my husband died,” she says. “That was a major blow. This was three years ago in March. I think it was a presidential election year, which is very important to me. My husband had always stressed how important that was. So I forced myself to vote. It was in a nearby school, and my daughter, who has a very good sense of direction, got lost.” Here she lets out a raspy groan. Getting lost was a very big deal. “That was the last time I was out.”

Before that, her agoraphobia had kept her indoors periodically, but never for longer than 10 months. Her first panic attack occurred in her early twenties, when one day for no apparent reason she felt her heart pounding. She had no idea what was happening. “They never gave those things names then,” she says.   “My general practitioner, he would just say ‘You’re the nervous type,’ or ‘You’re tired.'” When she was about 25, she began avoiding public situations, and her illness has become increasingly debilitating ever since. When her children were in grade school, she would force herself to attend parent-teacher conferences and school events. But eventually she was unable to lead a normal life.

Her contact with people diminished to a few friends and relatives, and her husband Morris was her world. “He went along with it, because he didn’t mind being home,” she says. “He wasn’t a go-er.” Nowadays her daughter, who holds down two jobs, does all of the errands. Jodi’s half of the apartment is somewhat separate from her mother’s, and Jodi spends her spare time surfing the web or going to an over-forty social club. Sandy passes the days watching cable news programs, doing household chores, cutting coupons for one of Jodi’s co-workers (this can take up to three hours at a time), and completing crossword puzzles.

Sometimes, even the apartment seems frightfully expansive to her, and the panic attacks are so debilitating that she cannot leave the room she is in to get to the refrigerator or the bathroom. Because Jodi is often not home, Sandy has an emergency kit, in case she has an especially bad day. It is a lunch box that contains Ritz crackers, a can of soda, and cat food for her cat, Pearl, who is overweight. “I worry more about the cat than me,” she says. This kit is “enough to survive,” she says, because “sometimes the attack is so bad I feel like I can’t walk from here to there.”

Sandy has never seen a psychiatrist or any mental health therapist, and like many people her age who lost faith in the medical profession in their youth, has no inclination to do so. Decades into her illness, she diagnosed herself with the assistance of Sally Jesse Raphael, who happened to one day be interviewing homebound agoraphobics via video monitors on her talk show.

In Sandy’s younger years she had been prescribed sedatives by her doctor, but she no longer has any interest in medication. “I had many years of it, ” she says. “Didn’t do anything.” I mention that there are newer medications and better therapies. “There’s no point in taking things,” she replies. “And I have no desire to go. I don’t know why. Nothing has come up that really makes me think that I have to do that.” Speaking about the therapy, she adds, “I’m no good at that,” and then laughs at her own inanity. “I don’t know what that means.”

“What if a therapist came to your apartment?” I ask.

“NOOOOO,” she moans. “No, I don’t like that, because I’d have to clean, and then I’d think, what if I had a panic attack while they were here?”

*

The most effective treatment for agoraphobics involves cognitive behavioral therapy, a method developed in the 1960s by the psychologist Aaron Beck. Cognitive behavioral therapists guide patients through journaling, mental exercises, and relaxation techniques in an effort to change thoughts and habits. Studies and practical experience have shown that for phobics, exposure therapy — behavioral therapy practiced at the scene of the patient’s fear — is more effective than cognitive behavioral therapy in the office. Exposure therapy is said to work for agoraphobics because it’s like shifting into reverse the process that created the illness. “During a panic attack, the patient feels, ‘Well, this is so awful, any sacrificing is worth it to avoid this happening,'” says Bush. “But the thing that they don’t know is, they don’t know about habituation. Habituation refers to the weakening of the response to a stimulus after encountering it many times. In other words, you stay with your terror, and it’ll go away. There is a built-in self-correction mechanism in the brain that’s not much fun to go through, but it works.”

But for the most severe agoraphobics, like Sandy Weckstein, just opening the front door is too difficult to tackle. That means that getting help from someone like Dr. Bush is outside of her reach.  “I don’t do the house calls,” says Bush, “because nobody can afford to pay for them and insurance won’t support you even if you have it.” He adds, “Many agoraphobics are living on very little money, often as a result of their agoraphobia, so self-paying is not an option for them. Meeting with relatives or friends who could work with the patient is generally non-reimbursable by insurance companies. Telephone supervision — which is highly desirable — is, again, not reimbursable. Much of the problem is in the rigidities of mental health insurance.”

Without treatment agoraphobia, like many mental illnesses, worsens with time. “The longer the disease maintains, the poorer the prognosis,” says Papp, “because you are developing other superimposed problems — the depression, the personality disorders.”

Personality disorders are an underlying difficulty that can occur alone or with other mental illnesses, and are notoriously difficult to treat. Just as anemias or chronic allergies can interfere with physical fitness, these disorders are pervasive, maladaptive traits that can weaken overall psychological health, aggravate symptoms, and hinder treatment. In the DSM-IV-TR, personality disorder diagnoses include paranoid, antisocial (which is associated with criminal behavior), avoidant, depressive, narcissistic, and dependent. These traits become exacerbated to the point of interfering with the sufferer’s social life, career, and home life. Someone with dependent personality disorder may act desperately needy with loved ones and be unable to care for himself. Someone with narcissistic personality disorder may believe the world revolves around her, and believe she is superior in every way.

Even without co-existing disorders, there are factors that might keep a longtime agoraphobic behind closed doors. Simple inertia can be a compelling force. “The threat of change exists for everybody,” says McGinn. “When you have something that’s familiar to you for a long time, its hard to give up. You grow up thinking you’re vulnerable to threat, and that’s hard to change because it means shifting your whole sense of self.”

Papp speaks about secondary gain, a concept that is well-known to medical professionals. “The secondary gain is that any illness you develop is going to confer some benefits to the patient,” he says. “People are going to be more considerate toward you. You can get out of certain responsibilities. The whole family structure may be accommodating the patient.”

Jerilyn Ross, who has treated phobics for more than 20 years, sees the combination of extreme personality traits, an entrenched lifestyle, and the illness itself as an especially potent mix of problems, resulting in a sometimes intense character. “I think when people have agoraphobia,” she says, “they often end up being very manipulative and controlling and quirky, because they’re so afraid of having to do things they don’t want to do.”

*

Joyce C. H. is the founder and president of an organization that serves Massachusetts residents unable to leave their homes. She is also agoraphobic, with some of the “quirky” tendencies Jerilyn Ross may have been referring to. Joyce is 60, with bust-length platinum blond hair, some of which is pulled into an I-Dream-of-Jeannie pony-tail at the top of her head. She is encrusted with make-up and jewelry, and wears a full length Lynx coat when it is especially cold. She works with local agoraphobics, attempting to ease them past their safety zones. “I’ll remain this way,” she says of her own agoraphobia. “There’s nobody doing this but me, so who’s gonna do it for me? You gonna have another one of me come in? Wait for cloning to be developed? There ain’t many of me around.”

Joyce says she works for free. She has treated and provided services for Jennifer Savage since 1996. The Boston organization she founded and runs, the Phobics United Foundation, treats homebound agoraphobics, brings them food, and liaisons so that they can obtain low-cost computers and free furniture — they provided Jennifer with the computer that connects her to the outside. Phobics United also provides these services for many other homebound people in Massachusetts, Rhode Island, and Connecticut, including single mothers, the elderly, and the physically handicapped. Joyce trains retirees — she recruits senior citizens through the Council on Aging — to bring donated food and comfort to homebound people in their own neighborhoods. She claims that Phobics United serves over 3000 people and that she has around 300 volunteer drivers to deliver food. Others in the business of serving the disadvantaged find this hard to believe, and Joyce both resists keeping records of her business and has a tendency to exaggerate. In fact, she seems unable to speak in anything but extremes in a voice that sounds like a Boston Fran Drescher doing an amplified impersonation of herself. She is loud and she is histrionic. She states repeatedly that her husband, Bobby, accompanies her everywhere, because he is her “safe person,” and she can only leave the house and function if he is with her. On the first day that I met her, her son, who is in the midst of marital problems, did not give her a Valentine’s Day card. She said that she was now going to end her relationship with him because of it. She wept in front of me four times. She is the unremitting provider of life-saving services, as she is simultaneously, she frequently points out, the abject neurotic in need of treatment. She is a woman filled with contradictions, and I found it almost impossible to reconcile Joyce the caregiver with Joyce the victim.

“I am the sole overseer of everything,” Joyce says of her business, “and I take not a penny. I won’t take a nickel. It would be hair-is-say. I was born to serve.”

Joyce and Bobby have four West Highland white terriers who squirm with excitement when Joyce tosses them Good and Plenty candies. Aside from an extensive Hummel figurine collection, her East Boston house is almost completely decorated in African motifs. There are leopard print lamp shades, zebra striped candles, giraffe and monkey throw pillows, and African masks on the walls. Joyce likes to shock her audience. She tells me that almost everyone else in the mental health system is either a moron or an idiot. Of Jerilyn Ross’s organization, she says “They suck. They are the biggest joke in town.” Of McLean Hospital, a highly regarded local psychiatric treatment facility, “I wouldn’t send my dog there.” She believes the local organization that donates furniture to her clients is only doing it for the tax write-off. She resents people who rehabilitate criminals. “There’s plenty of money being wasted on criminals. Personally, I believe in shooting them.” She has a thing about blind people. She had three relatives who were blind, and she believes they had it pretty good compared to her clients. She also has a thing about the wheelchair-bound. “They’ll spend millions and millions of dollars on someone in a wheelchair. Or on a multi-cultural disorder. All stupid things you can’t change. They spend ludicrous money on ludicrous things and forget what really is important.” Later that day, sitting on an overstuffed leather love seat in front of a muted big-screen TV (one of two), she declared, “A person in a wheelchair can get on a plane and go to Cleveland. They can go anyplace they want to go. And yet, ‘Oh, they’re in a wheelchair.’ There was a time you didn’t let me drive knowing there was someone in a wheelchair in front of me. I hate them. And the blind. People with AIDS. They’re demanding. Well, when’s my turn?” At this point Joyce is shouting. “What about my disability, which is far more debilitating than yours? All of them can travel, all of them can work. They have free choice. I don’t have free choice. I’m stuck. You want to hear the worst of the worst? I’m it. I’m as bad as it gets, even though you would never know it.”  What is important to Joyce is agoraphobics, who she believes are the greatest sufferers in this world. And she emphasizes to me repeatedly that of all of the agoraphobics she serves, she herself suffers the most. “I am the worst of the worst that you will find. Because if you really ask me what I can do for myself, it’s absolutely nothing.”

When Joyce was eight, she had a panic attack one day after lunch. This became a regular occurrence. She found that alcohol would soothe the attacks, so she soon began carrying a flask of brandy to grade school. She says that her godmother was agoraphobic, and because her own mother was abusive, she would run to her godmother’s house when she was feeling bad. When she was 15, she saw one of the two therapists who she believes ever helped her to feel better, but as an adult the panic attacks remained, and she has felt agoraphobic on and off ever since. She found it impossible to hold down jobs, and was homeless for a few months in her twenties. After two marriages, one of which she described as horribly abusive, Joyce met an electrician and Korean War vet who had his own set of problems, stemming from a debilitating case of post-traumatic stress disorder. Together Joyce and Bobby raised a child, also named Bob, and ran a balloon-bouquet business. The business was so successful, branching out into four stores, that Bobby traded in his electricians’ union card for a Cookie Monster suit, which he wore to deliver clusters of balloons to birthday boys and girls throughout the Boston metropolitan area.

In the mid-nineties, Joyce’s eldest son and his wife lost their 6 month-old son Jake to an illness. In 1996, in memory of her grandson, Joyce launched Phobics United. “There would be no Phobics United if my grandson didn’t die,” she says. “Every time I feed someone, I say thank you to Jake.” She says that she began with only $1500, that the business is now run on a $350,000 budget, and that every cent goes to the clients. She says that Phobic United is not required to file an annual tax return because they make so little money.

Joyce spends her weekdays overseeing operations in her headquarters in South Boston, and visiting the agoraphobic clients she is trying to coax out of their homes. Joyce does not have a degree in psychology, but feels she knows better than anyone how to help homebound phobics. She certainly seems to have a knack for the food program, and other respected organizations in Boston, including the mayor’s office, refer homebound and poverty-stricken clients to Phobics United every year. “There are very few resources for people in that situation,” says Diane Dickerson, an administrator at Project Bread, a local organization that directs clients to emergency food assistance. They come upon a homebound client about once a month, and refer those clients to Phobics United. “That is one organization that will deliver,” she says. “They’ve been great. They’ve been really responsive, really generous in helping people.”

“I don’t even think of myself as a person anymore,” Joyce says of her munificence. “I’m just a utility that you need like electricity to keep this world going around. I’m ahead of my time, but I am good at what I do. The reason I know I’m good at what I do is because of the agencies that are calling me and asking for help.”

Bobby is a seemingly light-hearted man who, at 72, has slowed down considerably since a stroke a few years ago. He appears to be the calming voice of reason in the household. Phobics United is Joyce’s baby, but Bobby oversees much of the food and driver program. “I thought I retired, but evidently I didn’t,” he says. “I put a lot of time into the food part. A tremendous amount of work. I grew up very poor and can’t refuse anybody.” He adds, “We help. We really help. And we’re one of the few organizations that really doesn’t make any money for it. We don’t have to do it. We want to do it.”

During my interview with Bobby, Joyce wanted him to emphasize how helpless she is in the grip of her agoraphobia.

“Can I go to a store by myself?” she asks.

“No,” Bobby assures me. “She can’t go by herself.”

“Can I make my own cup of coffee?” Joyce also feels she has developed obsessive-compulsive disorder, and that this keeps her from cooking food.

“No, you can’t do that either.”

“What would happen if you died?” she asks.

He pauses. “She’d die with me,” he laughs and looks toward her. “How’s that sound?”

While in Boston, I needed to get somewhere but did not have a car, and at the same time Joyce had to see a client. Bobby was busy. Much to my surprise, Joyce got into her silver Mercedes, with the word “PHOBIC” stamped onto its license plate, and drove me to my destination. She instructed me to call her when I needed to be picked up, and drove away by herself.

When I was ready to leave an hour later, she drove me to the local subway station, where I would be able to link up with my transportation to return home. She had been a generous host, treating me to Bobby’s homemade ham and letting me join them with their son when they had an extra ticket to the theater. She seemed pleased with our time together, and satisfied with the portrait I would come away with of her agoraphobic world.

“I’m sitting here, hoping that somehow what you’re learning is going to benefit the word agoraphobia,” she said of our time together, “and it’s going to make it known that there are many, many people like me, not probably as severe, but more weepier and more victimized — ‘Oh, poor me.’ Whereas, I am far worse but you don’t see it.”

*

Joyce is a far cry from the tenderhearted Emily Dickinson. But aside from her outlandish personality, which may be an indication of other disorders (if one is a true disciple of the DSM-IV-TR), Joyce is very much the typical agoraphobic that was portrayed to me by most of the therapists and researchers I interviewed. But while psychological studies may be conducted in departments of research and case studies written up about hospitalized patients, no one can know what goes on inside the home of someone who is — for whatever reason — compelled to be cut off from the rest of the world. Unless that person reaches out to find help, due to unhappiness or a simple desire to change, that person will remain invisible to both the mental health experts who want to know more about them, and the community that is minding its own business.

What therapist could ever treat, or even know of, someone like Sandy Weckstein?

John Bush was one of the few professionals I spoke with who acknowledged this problem. “I’m sure there are people that are perfectly happy to stay home,” he said. “But they’re not going to end up as patients, are they? The family might push them or their friends might push them, but they’re not going to show up here. And they’re not going to end up in any research studies, either.”

*

On the corner of Raymond Caldwell’s street, in the Dorchester neighborhood of Boston, I pass the Bethlehem Healing Temple. It is Sunday, and through the white wall of the church I can hear a woman’s singing voice, clapping, and shouts of joy from the congregation. Across the street is a huge Stop ‘N Shop, which Raymond can walk to but cannot bring himself to enter. In his small brick apartment building, Raymond, a 59 year-old African American, is watching four young boys, aged four to thirteen. The TV is tuned to Nickelodeon’s computer-animated Jimmy Neutron, but today is warmer than usual for March, and the kids are itching to go into the backyard.

“I want you to stay in the back,” he says to them, as he helps the youngest get into his winter coat. “Put a jacket on. Do you have a hat? You know it’s cold outside, right?”

Raymond wears an old mustard-colored T-shirt and black jeans, and there are faint dabs of gray in his hair. His teeth are broken to bits and cutting into his gums, the result of years of pyorrhea. “All my teeth are broken off,” he says. “All of them.” He has not yet found a dentist that will make a house call. He is a client of Phobics United, and Bobby and Joyce enthusiastically describe him as a friend. Raymond called Phobics United years ago because he was in trouble for not attending jury duty. When Joyce and Bobby came to see him, his legs were shaking uncontrollably and he was unable to work. Since then, through Phobics United, he was able to hook up with an organization that trained him to become a licensed day-care worker. His backyard has an enclosed playground, and he now teaches kids their ABC’s and 123’s in his apartment. He watches children — from babies to teens, many of them related to him as nieces, nephews, and grandchildren — all day and weekend.

“I can only go about a block around the area that I live in, which is my safe area,” he says. “I’ve been homebound now for 14 years.”

In the early seventies, Raymond was a maintenance man for Harvard University, a job he enjoyed. One day when he was 26, while standing high up on a scaffold painting a building facade, he experienced his first panic attack. He developed a fear of heights, which quickly broadened to a fear of open spaces. Soon he was unable to do his job, then unable to commute, and finally unable to go out at all. He had gone to see a Harvard psychiatrist, but says the psychiatrist did not know what was wrong, and wrote him a prescription for Valium. Like many agoraphobics, he was unable to collect disability. At his worst, he was unable to even be alone in his own home.

He likes watching the kids, has many visitors and, despite his inability to get around, is well known in his neighborhood. He takes anti-anxiety medications to keep the panic attacks to a minimum, but does not partake in any therapy.  “I think I’m me,” he says. “I think my biggest fear now is that there’s so much going on in the world today that I’m just feeling maybe I just don’t want to go out.” Recently, he missed the funerals of two friends who were shooting victims, and a couple of months ago he was unable to attend his brother’s funeral. “I would like to be able to spend time with my son, but I think deep down inside I really don’t want to get no better, you know? I’ve had this thing for so many years now, I just got used to it.” He adds, “Right now, the way things are, I’m content. I have my kids go to the store for me and do my banking and stuff, and I’m kind of content with that.”

Despite his feelings of complacence, Raymond does wonder what it would be like to be free of his agoraphobia. “I’ve been thinking about this for a while,” he says. “My goal is the baseball field on Columbia Road.” The field is in a park a couple of blocks away, and when Raymond was a younger man, he would play on it all the time. “I want to just lie by myself in the middle of it. Just lie there for a couple of hours. I think if I could conquer that, I could conquer anything.”

He says that if he got better, he would again pursue his favorite work, painting and decorating. Raymond gives me a tour of his apartment. The white kitchen is accented with large black checkerboard squares. On the kids’ room walls float portraits of the Tasmanian Devil, Tweety Bird, Scooby-Doo, and an unfinished Daffy Duck. Raymond’s bedroom is painted black. Gold glitter is sprinkled on the walls from floor to ceiling, interrupted only by a wide red band of paint with gold Japanese characters (they translate to the birthdays of his two youngest children). A giant gold panther hovers on the wall above his bed.

Raymond used to make good money painting and decorating, and he especially misses the kind of painting he was doing at Harvard — up high, in wide-open spaces. “There’s something about being outside working, especially up on staging,” he says. “You just feel like you’re so free up there. People are not aggravating you or bothering you. And to me, I felt so good doing this. And now, I can’t climb a ladder to the second floor.”

Raymond seems like the kind of person who could be helped by someone like Dr. Bush or Dr. McGinn, if they were to come make a house call in Dorchester, Massachusetts. “If I could get the help to get me out of this trouble I’m in, then that’d be fine,” he says. But he is not bitter about his illness, agoraphobia. “I’m living a pretty natural life. I’m not a sickly guy. I haven’t had a cold in 20 years. So I’ve been pretty fortunate, you know?”

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