atypical

What It’s Like to Cope With Your Agoraphobia by Buying a Motor Home

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Agoraphobia is an anxiety disorder causing acute feelings of terror, panic, helplessness, or fear of embarrassment in public — it’s both a common phobia and one that can take many forms. The word comes from Greek and means, literally, “fear of the marketplace,” and agoraphobes tend to fixate on the uncontrollable nature of public space, people, or situations (they also often suffer from other anxieties like emetophobia or OCD). While the term was first used in the 19th century to describe the fear of public spaces, it only became widely recognized as more common among women in the 1950s and ’60s, which led feminist cultural theorist Susan Bordo to argue it could be a psychological parody of the contemporary feminine ideal in the same way hysteria had been a reaction to restrictive Victorian social norms (i.e., “If you want me in the home, I’ll stay home … with a vengeance!”). Today, about 1.8 million American adults are agoraphobic, with a relatively late median age of onset in the mid-20s.

Contrary to popular belief, not all agoraphobics are housebound; many of them develop quite elaborate strategies to help them navigate the world. One of the most common coping methods is the construction of “safe zones” and rules about avoiding places where large groups congregate; other agoraphobics impose strict limits on the distance they’ll travel or will only visit places they have deemed “safe.”

Here, Polly Meyers talks about her unique solution to the agoraphobia she says may have been triggered by the year she spent in hospital as a child. Her safe zone? A motor home complete with her very own plush private toilet. For a full 20 years, she drove her trusty vehicle whenever she left her house, even if she was just going down the block to the store. Finally, she overcame her anxiety using natural medicine, exercise, and diet.

I hear you suffered from agoraphobia for 42 years.
I’m almost 70 years old, and these days I like to think I am pretty much anxiety-free, but I was almost crippled by it for the majority of my adult life. Looking back, it seems that I was about 8 years old when I first became anxious. I think I developed generalized anxiety disorder after a year-long stay at hospital when I was 7.

What happened?
I had scarlet fever. When I got out, I was generally frightened to do things outside the house. I hated being in new places — even a looming visit to my grandparents’ house would cause me to shake, empty my bowels, and stay awake for days. I had periodic panic attacks, which my parents thought must be a physical problem. I was taken to doctors, and I went through a series of GI tests.

Can you remember exactly how it started?
The first thing I noticed was that it was hard to go to school — the bus ride was traumatic. It would get better as the semester would go on, but then after vacations or summer break it felt impossible. I’d be up in the middle of the night for hours, shaking anticipating leaving the house. And then I began to restrict myself.

What do you mean?
First, it was a phobia of getting sick in public. So anytime anybody around me threw up, I wouldn’t eat for days. I didn’t want to lose control with people watching me. And then I started dreading social situations. I couldn’t go to sleepovers; I’d usually figure out an excuse and stay home, because if I went and got anxious, I’d get instant diarrhea — like you had turned on a tap. I would empty out in seconds. That made me very anxious about going anywhere. Field trips were totally miserable — I was anxious all day, whereas all my friends craved the freedom and new experience.

After one traumatic bus trip, I made up a set of rules. If I was 15 minutes away from home, it was okay, as long as there was an escape route that I was in total control of. But I became very, very skilled at avoiding things. Personally, I think that hospital stay set me up, because I didn’t eat and I was so sick and alone in my own head monitoring everything for so long.

How would you describe what that’s like — to fear the outside world?
Say I knew I had to do something outside the next day. I’d wake up, go to the bathroom with terrible diarrhea, then I would shake for a few hours. Negative thoughts swirling round and round and round: How can I get up? How can I do it? How am I gonna survive? How can I face all those people? I just want to stay home. I’d be thinking to myself, Will I live?

Total panic mode?
Say I knew that I had a particular appointment in a month. In those weeks leading up, I wouldn’t eat or sleep. As the date got closer, I would disassociate — zone out and empty my bowels so much there wasn’t anything left. If I didn’t just flake and make an excuse not to go, I would just go through the motions, as if I had left my body.

How often were you able to do that?
I pushed myself to go out and do things all through childhood and my teenage years. I really suffered through it, and then when I was in my mid-20s, I had a major crash and couldn’t step foot out of the house.

Let’s go back to the beginning. What were you like as a little girl?
I was born in La Jolla, California. When I was 5, we moved to a turkey ranch. There were some hard times — during the worst, mom picked weeds and dad collected roadkill for dinner. There was lots of turkey to eat, though. Those birds are very stubborn. When it rains, they’ll drown themselves, so my dad would wring their necks and then we’d have meat to eat. Before I went to hospital I’m told I was outgoing, happy, and a big eater. I climbed trees and rolled in the barley fields with my cousins. We were so tiny the plants hid us from adult eyes, and we weren’t even scared of the rattlesnakes. But then, when I was 7, I got terribly sick. In those days, parents didn’t stay with their kids in hospital. My dad cried all the way home because he had to leave me all alone in my hospital bed.

I recently read a study about the relationship between being hospitalized as a child and anxiety disorders. Back then, children’s hospitals were especially cold and impersonal, and you’d have absorbed your parents stress — you were very sick.
Absolutely. I was so ill they put me in a glass cubicle in the nurse’s station. I saw awful things — sick kids everywhere. There were no curtains — blood, vomit all over the place. It made me cry. I watched a little boy violently throw up for three whole days. I had to put my fingers in my ears to block the gagging sounds out. Nobody visited him, and I wondered if the court had taken him from his parents — I’d heard someone say he’d eaten fly poison. Finally, Dad hung a sheet between us for some privacy. When he disappeared, I knew he’d died. A little boy my own age died in a bed right next to me. I know that had an impact. I got more and more sick with complications, and they thought I was going to die, so they locked me in an isolation crib on black plastic rubber to protect the bed from urine. I felt so suffocated.

You were actually locked in?
That’s what it felt like to me as a child. There were hardly any windows. I could sense I was close to death. My parents began to stay through the night. I weighed 35 pounds. Doctors thought any excitement would kill me, so I was in isolation listening to everything going on around me. I was constantly monitoring. I think I became hyperaware of my surroundings and my own body. I learned everybody’s footsteps. I could tell who was passing my door, comings and goings at the nurses’ station. That was the only stimulation I got. And of course I heard horrible things. Once I swear I heard the surgeon saw off a man’s leg. I was in hospital for 11 months, two weeks, and two days.

What did you think about that whole time?
I tried to stay positive, but I was always very nauseous and got into a habit of throwing up and swallowing it. I was alone. You know how when you’re a kid, you worry about bothering adults? I felt bad that I had to depend on so many people. They had to teach me to walk again before I could go home, and the doctor told my mother that I was not to do anything physical because my bones were so brittle. On my first day of freedom, I climbed to the very top of a tall tree. At night, we all slept in the garage in Army bunk beds, so I had the company of my siblings and 18 dolls given to me while I was sick.

I obsessed — making sure all my girls were tucked in at night because I worried about their feelings. I was very sensitive and hyperperceptive. Later, I remember I scolded a cheerleader for picking on a girl who was socially awkward. In sixth grade, the school had a special magic show; you had to pay 50 cents to get in. About ten kids couldn’t afford it, so they were shut out. I refused to go in solidarity. I couldn’t get over how unfair that was, so I threw the kids a party. I baked cookies and make fresh lemonade, and we had a ball. I thought that was so cruel to exclude kids just because they were poor.

What happened as you got older? You mentioned you didn’t crash totally until you were in your 20s.
Yes. I met my husband when I was 16, and I was instantly comfortable around him, even though I was still restricting myself and hardly eating. I knew he was special because he was caring and very affectionate. The first thing I noticed was his soft hands. We had to call off the wedding because I had dropped to 87 pounds and he thought the social pressure would kill me. Instead, I was married at home in front of the fireplace wearing a winter dress to keep warm.

But my anxiety didn’t go away. For many years, I would start my day with an excuse about why I might not be able to do something. I might tell my husband when I woke up, Oh, my stomach’s upset today, even when it wasn’t. I couldn’t do the things that we all take for granted — like getting a nice hairdo at a salon. I just cut it myself.

One of my big fears was upsetting people and ruining their time or wasting their money. Say my husband tried to organize dinner with friends — I’d think, Are you trying to kill me? So I would come up with excuses and we would never go. If I said I would meet them, then they would have to spend money on dinner only to watch me leave in the middle and ruin it and upset them. And if they offered to pay? Forget it! I’d fear that I would be wasting their money, because I knew I wouldn’t be able to eat and I’d be bad company. And I hated to embarrass or upset other people and I didn’t want to be embarrassed or humiliated.

Seems like it took over every part of your life.
At first I didn’t have panic disorder in my dreams. I was free to do everything. But after about 15 years, it invaded my sleeping life.

When did you become housebound?
I got pregnant in college, and after I had my son, I did beautifully. I actually thought the anxiety was gone. I gained weight and went to work in real estate: My brain was occupied. Those were the best years of my life. I flew on planes. I would go meet my husband in different cities all by myself. I thought I was “cured.”

And then one day, when I was at a zoo’s wild-animal safari, it hit me.

A safari! What happened? That’s so melodramatic.
I was feeling kind of edgy as we were getting on the tram, and I said to my husband, “I don’t know if I should do this.” But I did because I couldn’t let my son down. I boarded, the doors closed, and I had a 45-minute panic attack against the backdrop of wild lions, elephants, and tigers. I knew that I couldn’t get off, and I didn’t want anyone except for my husband to know what I was feeling. It was, Stay on the tram or get savaged by wild animals — quite literally.

How did you hide it from the other passengers?
I’d gone to the bathroom right before, so thankfully I was able to hold it in, but I went through hell. I trembled and talked to my husband and tried to act like a “normal” person. That’s what we do.

Agoraphobics, you mean?
Yes, or people who have anxiety. We try to act “normal,” and so we are inwardly thinking and thinking and thinking and thinking, and that means we are so into how frightened we are — almost high on it. We pay way too much attention to our bodies.

After that, I didn’t leave my house for two weeks. This was my big crash. I couldn’t even walk out my front door. I was willing to give up my husband and my baby if I could go to an institution. I remember I prayed that somebody would just knock me out.

How would you describe that feeling to someone who doesn’t know what agoraphobia or social anxiety is?
A total mental overload of fear and a nonstop two-week-long panic attack. There was no break. I was shaking. My mouth was dry. I didn’t eat. I felt sick.

How did you get past it?
I was open about it, and I told my aunt. She has anxiety, too. She gave me a book, and I read it cover to cover. It had a name for what was happening to me: I was agoraphobic, something therapists later confirmed. When I finished reading, I gingerly got up and mixed a stiff vodka-and-soda (I never drink). Next, I opened my front door because there was a house being built across the street and I wanted to see the progress. I walked across a two-lane road and laughed for the first time in weeks. But that vodka-emboldened walk was as far as I could get. I couldn’t go to the store. I wouldn’t get in the car. I couldn’t do anything but walk from the kitchen to the bathroom and the bedroom, but that’s about it. I was in shutdown mode. I don’t know how we survived that. I was a robot.

So do you think you had panic disorder, or generalized anxiety disorder that manifested agoraphobia? It seems like you also had a fear of throwing up beginning with your time in the hospital.
After I got out of the hospital, I had generalized anxiety disorder. In other words, my body felt the tingles, the chemistry, the nausea. I was frightened about being in new places and especially scared of being sick in public. And I had periodic panic attacks — well, when I look back, I can see that’s what they were, but I thought I had a physical problem. I did less and less. I had to be able to get home in 15 minutes. If I went somewhere with my grandparents, I was absolutely terrified.

The chemistry of anxiety makes you very fearful, and you don’t know what you’re afraid of, but you do know that you’re afraid. It’s supposed to make you think very quickly to solve a problem because you think you are dying. Your brain goes round and round: What am I gonna do? How do I get out of this? I gotta get out of this! What’s going on? Why do I feel like this? Can someone knock me out? It was really a fear of being trapped and not being able to escape and feeling humiliated. Nothing was worthwhile. I was willing to give up my son and my husband — I felt helpless, useless. No, I felt frozen.

And then, after nearly a month inside, my husband did something that changed my life.

What did he do?
He came back from work with a brand-new 22-foot Commander motor home emblazoned with an orange stripe. These vehicles were brand new back then — it was such a luxury and a total surprise. He’d had this thought, What if Polly had a bathroom or a safe place to go to in the car? And then we rented out the house, put all our stuff in the motor home, took our dogs and the baby, and traveled for a month. I felt in control. I started to eat again. I would run to the store and get supplies for dinner and cook in the van. We went to the mountains and swam in a river, sunbathed, and played with our son. No responsibilities, no bills. I was able to get some balance back.

And then for the next 20 years, I drove that motor home everywhere. I didn’t go anywhere without it. I went to the store down the street. I took it to the supermarket, to the beach. I couldn’t function unless I knew it was nearby, because if I started to shake, or got nauseated or that terrible diarrhea, I had my safe space to retreat to.

There was a restaurant in a bowling alley just down the street — we took the motor home and I’d park as close to the door as possible and I always had to have two parking spaces. Once we were there, I would only be able to eat if I knew that I could run out and get to my motor home. I didn’t want anyone to think that I was sick in a restaurant. I didn’t want to use the bathroom: What if someone came in? What if I couldn’t unlock the door and someone needed to get in and I’m still — you know.

I didn’t let anyone in that vehicle except my children and my husband. And that’s how I handled my agoraphobia for 20 years.

How did the idea come to him?
He surprised me. I was in such a state, and I was so exhausted, so my memory is not good. But I remember him driving this huge van up the drive and thinking there was no way I would be able to drive it. Now I just marvel, How many people can afford to do that? How many people would do that? He was such a kind and caring man. He was a chiropractor, and he could tune into his patients like you couldn’t believe. Maybe that’s what he did with me?

What was your relationship with your kids like? It seems like you basically raised them in a motor home.
I took care of my sons, but I know it was really hard on them. Once I promised my first son we’d go to Disneyland — but I kept backing out. I didn’t think I could get in the gate. Instead, I took him to a park and he fell in a stream and got so wet we had to buy him new clothes. He cried and said, “This would never have happened if we went to Disneyland.” I felt awful. He was devastated, and I knew I had to take him. I managed to get to the gate. I just stood there, though. I knew I could rush out to the motor home, but if I got on a ride, I’d be trapped.

Then I got pregnant a second time. I thought I might get better like the first time, but it got worse. Getting to the obstetrician was a nightmare. I’d go in my motor home — I’d have to start out really early and try to get a space that was big enough. I learned how to parallel park that motor home like a professional. Once, I went to San Francisco to drop my husband off for a job interview. I decided to drive to Chinatown, but the motor home didn’t fit down this narrow street, so my 4-year-old son was directing me as I backed the home up into the traffic. I did everything — every party, every trip, everything — but the motor home was there.

But back to my family. My youngest son developed something called “counterphobia,” where he would insist on facing his fears. I remember once when he was scared, he said “I am so nervous!” He was parroting what he had heard me say. I taught him the language of fear and anxiety. That was eye-opening for me. As he got older, he put himself in harm’s way to prove he was brave and strong. He was a paragliding instructor, so he’s been in plenty of life-threatening situations. And my oldest son’s kids have anxiety, too.

How did you get to a point where you were able to abandon the motor home?
My husband figured out how to treat my anxiety naturally — using different supplements and techniques to rebalance the body: hydration, diet, blood-sugar balance, toxins, bowel function, stuff like that. He’d been interested in alternative medicine since college. Standard medicine pushes you to become drug dependent rather than healing the body. I did have Valium and Xanax, which worked for a panic attacks but made me depressed. My father was an alcoholic and a drug addict, so I was very resistant to medication. My son went the opposite way when he had anxiety and went through 18 different medications; he’s off them now, but it took him forever.

But I really do think my husband’s methods saved me. The real turning point was when I started taking magnesium. I also took a course. One of the first things they instructed us to do was practice telling people that we had anxiety disorder to break down the fear of humiliation if I did panic in public. And then I started facing my fears. Say, flying. At first, I would get really nervous just to look at a picture of an airplane. So I started with pictures. Then I started taking short flights, say 20 minutes, then longer ones. Once, I was flying with my sister back from Vegas and this guy sat down next to me and I was on my Xanax but I was really nervous. I said, “Why do you suppose the universe put us together?” My sister was mortified because I was pill-talking to this stranger, but I went on and I said, “I have anxiety disorder, so this is really hard for me.” He said, “Oh my gosh, I almost rented a car I was so scared of flying.” So we sat and talked for the whole flight.

Where are you these days? Are you back to “normal” — or is that the wrong word to use?
Eventually, I got good enough to drive or travel alone. When I first started trying to function without the motor home, even the thought of having to get on the shuttle to pick up a rental car was unreal to me. I had to do all this practicing. It was really, really hard. Today, I would just hop off and get on the shuttle and go to get a rental car myself. In the past, I had to have complete control. Earlier today, I was thinking about how now I can go to a hair salon and fall asleep in the chair. But it’s been a long process for me, because I didn’t know what “normal” meant. I’ve been anxious as far back as I can remember. I don’t remember traveling comfortably. I don’t remember socializing or visiting strangers comfortably. The anxiety kicked in so early that I didn’t have much of a reference for what life is like without it.

Tell me about your oldest son.
That’s important — he’s dead. He was a pro-snowboarder. They didn’t wear helmets, and he hit his head on a piece of ice during a daring move. He had a brain bleed, which caused violent seizures. I kept asking the universe for help. We found a doctor who was a pioneer in the area, and my son was seizure-free for nine years. Then one day he went surfing, and while waiting for a wave, he toppled over and drowned. I’m sure he was gone way before they got him to the shore. He was 36. He left me with two wonderful grandkids, but I watched how hard this was on them, and of course both of them have anxiety disorder. I think they tipped over early because of the trauma of their dad’s death. I really do think there’s a genetic component, though. My dad self-medicated his anxiety with drugs and alcohol. He was outgoing, and he stood up for people, but he made his highest-ever commission when he was on diet meds. But yes, this seems to have tipped my grandchildren over. There were a lot of tears — but I didn’t show them in public. My husband and I went back to work at the clinic and hung a sign on the door reading: “Please feel free to come in, you help us feel better.” We just went on. And now my husband has gone.

What happened?
He had a birth defect that caused a sliced blood vessel in his neck. He died in my arms on the couch. I was glad I was there because I know he didn’t suffer for long. My husband had made his wishes known very clearly, and his rule was: If he couldn’t see patients, he didn’t want to live. I had to fight the doctors. It took about five hours before they pulled him off the machines. I felt him leave, and I said, He’s gone.

I’m trying to imagine how unsettling it would be to lose a child and then to lose your husband.
That loss was so very, very hard. Like an amputation. We loved to cuddle, and for 40 years, we had slept tight in each other’s arms every night. But, amazingly, my anxiety didn’t flare up. I knew what to do to look after myself. I knew to eat, breathe, and balance my body. That was my husband’s legacy — all the stuff he learned and taught me. It was stressful. I lost my income, and I had to scurry around and try to make things work. But you know what? I think I’m more resilient than the average person, because I’ve gone through anxiety.

Anxious people are so strong, but feel so weak …
Anxious people think they’re weak, but they’re not. They’re stronger than the average person. The anxious person has to put one foot in front of the other without committing suicide or totally opting out of society — that’s a big deal.

Coping With Agoraphobia by Buying a Motor Home