Naming Names – Putting Agoraphobia Into WordsPosted in Acceptance, Agoraphobia, Communication, Growing Up, Panic Attacks, Personal Stories, Poverty, Self-Acceptance, Self-Care By Nikki On January 10, 2013
I still don’t know how to talk about agoraphobia. I’ve been trying to figure out how to explain it to people since I was 16 years old, but I’ve been largely unsuccessful at putting it into words. I’ve mostly just stayed quiet about it and used vague “anxiety” euphemisms to describe why I can’t hang out / go to work / go to class / go grocery shopping / whatever, and have also spent a lot of time struggling to come up with “legitimate” ways to account for what I do with my time while NOT doing these things, especially since spending [lots of] time alone or in my “safe zones” is actually super positive for me. For almost 20 years, I’ve had no concept of how to talk about this enormous part of me that has both limited me in humongous ways and also shaped me into the wonderful weirdo that the people close to me know and love.
I admit that I’ve been doing some creative downplay – “I’m just a weirdo that likes to be alone a lot,” I’ve told people. Everyone says that, no matter how much alone time they really need, so I figure it’s safe enough that nobody will actually do any research to find out just how much time I am spending alone (which is, I suppose, an awful lot). Sometimes I blame my general absence from the world on residual teenage goth stuff. That it’s just because I’m a sulky writer, because I’m a brooding musical artist in heavy eyeliner and black lipstick, because I just have too much deep shit to do. It helps to have a sense of humor about all of this, I don’t know where I’d be without that. My most recent thing has been that I’m just a Highly Sensitive Person who needs lots of recharge time between social activities (since I read this in a book, it felt super validating). And these things are all true, mind you; but I wonder how much damage I have been doing over the years to both myself and my relationships with those close to me by not talking about agoraphobia as a legitimate part of my life with real, actual words that describe my limitations.
I remember quitting high school at 17 – my mother was dying from a slew of AIDS-related illnesses and had shrunken down to 5’2, and together we walked awkwardly into the school administration office and announced that I was basically too insane to keep trying to go there. I had been diagnosed with agoraphobia, among other things, because I had become unable to be anywhere without being so worried about panic attacks that I’d actually GIVE myself panic attacks… and I especially had a hard time being anywhere where my dying mother wasn’t within earshot. I had to admit all of this to the vice principal, who was this terrifying little dude that looked straight-up like Hitler and used to stand in the hallways and yell unintelligible insults at people between classes with his tiny, shrill voice. I wish I had a picture so you could see him. Anyway, I was a senior and I already wasn’t going to graduate that year – I was failing all of my classes because of my agoraphobia, among other things. The vice principal offered me a deal – take another week off, come back and try my best, and then come back for summer school and retake any classes I failed and he’d just hand me a diploma. Just like that. “You can even walk with the class at graduation, nobody will even know!” he stated jubilantly through his mustache as I physically recoiled at the idea of doing ANYTHING “with the class.” The thought of having to ever be in that space again terrified me to such a fucked up degree that I, without any thought whatsoever, dramatically jumped out of the chair and ran out of the office, out the door, and into the pseudo-safety of my mother’s car that had no front-end or headlights that she could only drive in the daytime, nicknamed “The Toothless Grin.” I sat there in the Toothless Grin panicking, the bell wouldn’t ring so no students would come outside and see me hyperventilating in that junky, embarrassing car. Eventually, my mother came out, got into the car, sighed, and told me I had to try something new before they’d let me leave – I had to let teachers come into our apartment to teach me. This was my first experience with an institution attempting to be accommodating for my disability, and at the time, it sounded like the shittiest, scariest accommodation ever.
The first time a teacher came over, I was in my pajamas. It was 4:30 PM, I had just woken up. My mother was sitting on the couch chain-smoking as usual, drinking instant coffee out of a Styrofoam cup and nodding out periodically to Oprah, which she respectfully had on mute as to not disturb my important algebra lesson. When I let Mrs. Bigley in, and she nearly fell over choking over the cigarette smoke and my mother’s If You Love Giorgio You’ll Love PRIMO! drugstore perfume that she so earnestly used as air freshener. Mrs. Bigley avoided eye contact with both my mother and I as she tossed a stack of worksheets on the kitchen table and just slightly perched her ass upon the yellowed-from-smoke cushion tied to the kitchen chair as though it would give her AIDS were she to put all of her weight on it. I couldn’t imagine what would happen if she had to go to the bathroom! The “lesson” ended with me crying and yelling in some sort of panic-induced frenzy as my mother ushered Mrs. Bigley out the apartment door in tears.
The second time a teacher came over I refused to leave my room. It wasn’t Mrs. Bigley that time, it was someone else. Some guy. When I heard the knock at the door, I ran to my room and refused to leave it, despite my mother’s tearful, embarrassed pleas from the other side of the door. I couldn’t do it. There was just no fucking way.
And that’s the thing with agoraphobia. It creates the hardest, most bulletproof limits one could ever imagine. Sometimes you are living in a tiny stone castle on an island surrounded by a river of lava, though perhaps just on the other side of the lava is everyone you love, happy and missing you, or perhaps the job you have to work in order to pay your rent. And while that lava may be too terrifying for you to cross, you wind up with a lot of time to make your stone castle cozy, safe and comfortable (remember, I’m not just an agoraphobe, but I’m a Taurean agoraphobe). Rather than expose yourself to terror when you don’t absolutely have to, you may expose yourself to learning new things, researching, making art, obsessing over perfect chord progressions in songs, inviting people into your nest, or anything else that makes you happy. But other times it fucking sucks and it’s like all of your loved ones, bosses, teachers and ancestors have their hands on your back and are forcefully pushing you across a bridge that leads to a pit of deadly serpents (harsh toke). It’s not always bad, and it’s not always good. It’s not the fear of being outside, or even the fear of certain places; it’s the fear of no escape, the fear of being abuse-triggered in public, the fear of finally going crazy, the fear of sudden death.
The Teenage Recluse Eventually Becomes An Adult
The teachers stopped coming and I never finished high school. I had jobs off and on over the years and have the same patterns at all of them – I start out determined, with some (much needed) false courage rooted in the desperation of poverty, and I end up getting fired for attendance or insubordination, mysteriously “laid off” when trying to work with bosses around my abilities, or quitting without even so much as a phone call or a letter. I’ve found ways to make money doing “other things” that sustained me for various periods of time, but eventually, “other things” took their toll on both my body and my mental health.
Here’s the thing that is confusing to most people: sometimes I can go out and be very social. I often enjoy parties, playing music at venues or house shows, shopping trips, and hangouts. I’m chatty, I can be charming, & I can get quite comfortable around my friends. I can be tits-out on the gay nude beach surrounded by other femme babes, I can go on trips with friends and chill hard with all kinds of people. I can sometimes get through a day of classes at college without incident, even enjoying them.
And sometimes, in the middle of any of those situations, it happens – it starts with a slight feeling of nervousness that quickly turns into dread. Often I am positive that I am going to die, and I fight for the words to tell those who I’m with what is happening while some unknown force (who ARE you?) covers my mouth to spare me the embarrassment. At times, I cannot talk or even breathe, and sometimes I have enough control to catch it and get somewhere private to re-ground. But at my worst, I lose time and wind up somewhere else, like on a train back to my house or at a bus stop, or sometimes just across the room with one of my safe people who may not even know that I just completely dissociated and that their mere presence just saved me from who-knows-the-fuck-what.
It is the fear of those times that has continued to shrink my world over the years.
It is being fearful of the dissociation that can be triggered by public panic attacks & not feeling confident that I will be safe when I am in that state, that keeps me limited to certain places.
My safe zones are complicated and always changing, and often seemingly arbitrary. My house is safe unless there are shitty people in it, which doesn’t happen often. Certain places on my college campus are safe zones, though there are a bunch of “unsafe” or danger zones that I have to pass through in order to get to them – this prevents me from going (or makes me so worked up that I have to rush out of class early) more often than I’d care to admit. There’s bars and coffee shops that are safe, and there’s bars and coffee shops that are not. The grocery store down the street from me is a safe zone, but part of the walk there has become part of the danger zone unless I’m accompanied by a friend (note: this has nothing to do with neighborhoods, or crime, or anything else… the fact that these “zones” are so arbitrary has contributed to me not having the slightest idea how to talk about agoraphobia in general). Most of the homes of the people I know well are safe zones, but not all of the rooms in their homes. Being in a car, as either a driver or passenger, is safe and really awesome for me, and sometimes makes me feel invincible and able to push through that river of lava and go absolutely anywhere. When I am in a car I want to keep going forever, I think things like, “I fucking feel amazing and my life is awesome and my world is huge and I fuckin’ love this song and who the fuck ever said I’m crazy, anyway? Fuck them!” You know, and then I arrive at my destination and stuff can go either way, depending on any number of variables.
I’ve had some luck creating safe zones by way of magical visualization, building a shield of protection around myself, but the effectiveness of this magical bubble is limited by where I’m located, geographically, as well as how powerful I feel at the time. Sometimes my strength/power is low and my bubble is too permeable, ready to pop at any moment, leaving me exposed.
If I were to draw a map of my safe zones (which is actually on my to-do list!), it would be pretty damn disjointed. The one thing that they all have in common is that I am under the illusion that there’s a way for me to escape should I need to, or I feel confident that should I have a panic attack that causes me to dissociate, I will not be in danger. If/when I am limited to my safe zones, my mental health is actually… dare I say it… really good? PTSD/abuse triggers that happen in my room suck, often super badly, but they don’t happen nearly as often as they do when I enter a danger zone…. hence… agoraphobia.
Something I have to constantly be conscious of is people who become part of my safe zones. On one hand, it’s good for everyone to have safe people in their lives. But on the other hand, you gotta really manage that tightly when you have agoraphobia or anything else that puts a unique amount of need for mutual understanding at the core of your relationships. Part of agoraphobia is often having to ask for extra help from friends and lovers to do “simple” tasks, and it’s surprisingly easy to become confused about how much you can really ask for or expect to receive. It can lead to some serious codependency, resentment, and abandonment issues if it’s not kept in check. Real talk: that stuff is scary and every day is a struggle with TEMPERANCE. I am constantly meditating on that balance, of mixing water with wine, without compromising my need for both [lots of] time alone and [lots of] time with loved ones. Part of that meditation is visualizing myself becoming filled with a warm, glowing light that originates from my heart and ultimately fills my body with strength and love, all originating from within me. It’s important for me to remember (which sometimes means reminding myself, or asking others for some reminding) that despite having agoraphobia, I am a whole person, an amazingly strong & powerful woman, no matter where I am, who I’m with, or what kind of help I need to ask for to complete a task.
I’ve spent years trying to learn how to make peace with those people who don’t believe that my erratic presence and behavior is a legitimate effect of my mental health. I’ve been trying to be calm about the “where have you beens” and the “why weren’t you theres.” I am only recently taking responsibility for the fact that I haven’t been honest about having agoraphobia, and what that actually looks like. I told you all, way back up there, the excuses I have been making. While I’ve been honest about needing to be alone often to preserve my sanity, I haven’t really been specific. So it comes as no surprise that my absence is often interpreted as personal attacks to those I love. I’ve spent many sad nights alone when feeling pretty strong and ready to conquer the world, wondering where all of my friends are, debating whether or not to chalk it up to people not being cool about me being a crazy person, or people just not believing me and getting angry or hurt instead. Those feelings they feel are legitimate & valid. I am not an easy person to be close to, and this is one of the reasons.
A few months ago, I was doing some pretty intense spiritual work and I kept coming across this phrase: “Use your words.” Since then, I’ve been trying to make sure I understand the message correctly. It’s a constant experiment – sometimes I think I got it, and other times the words are all wrong. It’s been a slow process, but I’m getting there. I’m thinking about this in terms of that whole “naming emotions” part of DBT, where you suddenly feel some overwhelming blast of emotion, but once you can successfully name what it is, it takes the edge off a bit and makes it more manageable. I am now using this tactic for talking about agoraphobia. I’m “using my words” to talk about this, to make my limits known. I’m fighting for time and struggling to support myself financially, but I’m dedicated to figuring it out. While my physical world may be limited, I am not limited to the physical world. But I truly believe that with time and practice, I will learn to carve new pathways that will expand my physical world, too.
Nikki is a 30-something crazy queer big-haired gothy dirtbag femme Taurus in Portland, OR who grew up junkie class in NJ. She loves making magic, making music, drawing maps & talking to the dead. She's an anxiety-riddled, panic-stricken, scaredycat tough-as-fuck abuse-surviving agoraphobic weirdo with PTSD, ADD & a tendency to dissociate. She once thought that it was a problem that she found secret meanings & messages in everything that she encountered, but now realizes that it's a gift for survival.
Thank You for this well written piece. I am older, but come to a point where I can’t take it anymore, I must be human again! This lead me here. I will share this piece.