No Comfort Zone
Notes on Living with Post Traumatic Stress Disorder
By Marla Handy
Published by Mocassa Press at Smashwords
Copyright © 2010 By Marla Handy
Mocassa Press, PO Box 45355, Madison, WI 53744, USA
This book is available in print at most online retailers.
All rights reserved.
Smashwords Edition, License Notes
This ebook is licensed for your personal enjoyment only. This ebook may not be re-sold or given away to other people. If you would like to share this book with another person, please purchase an additional copy for each recipient. If you’re reading this book and did not purchase it, or it was not purchased for your use only, then please return to Smashwords.com and purchase your own copy.
This book is dedicated to everyone who believes that she or he is the only one. You’re not.
Table of Contents
This is not a memoir. I don’t know you well enough for that.
In fact, I’m not sure I know my own past well enough for that.
This is about my today, my every day. I want you to know something about what it’s like to live my life. I often don’t react to life’s events like most of you, and the roots of my reactions aren’t obvious.
I have post-traumatic stress disorder (PTSD), a condition most often associated with war veterans. Unfortunately, it is also prevalent here on the home front, among those of us who have seen the really ugly side of life: sex abuse, rape, captivity, exploitation, the threat of harm to loved ones. We become damaged in the same way. It just tends to take us longer to get diagnosed.
My condition is the result of experiencing an extreme, but very real, slice of humanity. The consequences are lasting. I’m writing this because I want you to know me and my messiness and, as a result, know that you also come in contact with this slice of humanity. You live among those who create the messiness, and those of us who are marked by it. Ugliness is not confined to sensational news stories and hushed gossip. It wanders through our daily lives, but those of you with a choice often do not see it.
I don’t have that choice.
I see it. Or sense it. Or fear it. And sometimes I react in ways that are hard to explain and even embarrassing. This is what I always considered to be my messiness.
It took me years to figure out that it is PTSD.
I don’t know you well enough to tell you all the gritty details of my life, but I do want you to know me better. And I want you to know what I’ve learned about PTSD.
This isn’t a self-help book. I don’t claim to have any answers or magic wands. All I have to offer is a window into one life. But maybe a glimpse through this window, framed by an understanding of PTSD, will make it easier to recognize this kind of messiness when you see it.
And that would make me feel less alone.
But then, feeling isolated is a symptom of PTSD.
~ ~ ~
Trauma, by definition, is horrifying and to some extent disrupts the lives of any who experience it. But, for some of us, trauma permanently alters our being. Our biology and emotional reactions to the world are changed in measurable, physical ways.
It pushes us through the looking glass.
This is post-traumatic stress disorder. The symptoms include reexperiencing the traumatic event(s) in different ways, hyperarousal that can take various forms, avoidance of things that are associated with the event(s) and feelings of emotional numbness. Other symptoms can include suicidal thoughts or substance abuse. It often comes with a sense of shame or guilt for either not having prevented the trauma or surviving it when others did not.
Although those of us with PTSD may also have depression at times, PTSD is not the same as depression. In fact, it is classified as an anxiety disorder, one that can forever change how the body reacts to the world.
PTSD is now believed to come in two flavors, regular and complex. These are separate from the categories of acute (symptoms lasting six months or less) and chronic (symptoms lasting more than six months, often a lifetime).
“Regular” PTSD is usually the result of experiencing a single traumatic event or episode such as a rape, a car accident, a natural disaster or witnessing a murder. The trauma of these events includes the very real belief that one might not survive. Most soldiers who have PTSD have this type. Even though they may have experienced traumatic stress over the length of their deployment, the trauma was still isolated from their “real” lives.
People with regular PTSD just want to get back to where they were, to what was once their real life. When they could relax. When they were innocent.
They wish they didn’t know now what they didn’t know then.
Those with complex post-traumatic stress disorder (C-PTSD) have lost more than their sense of safety or control in the world. Their sense of personhood and personal integrity has also been violated or stunted. People with C-PTSD either never had a “then” — a time before things got bad — or their earlier experience was overcome by having “real” life become continuously traumatic. This applies to people who have been under the complete control of others for an extended period of time. Captives, hostages, kids trapped in sex rings, POWs, those caught in life-threatening domestic abuse situations and victims of childhood abuse and sexual abuse usually fall into this category.
People with complex post-traumatic stress disorder not only have symptoms of PTSD, which can be very confusing, but they’re also not quite sure of their own identities, because the trauma crushed their sense of being an individual with a right to choice and expression.
Traumatic events might shatter one’s sense of continuity in the world, but continuously conforming to the demands of an oppressor can shatter one’s sense of continuity as a person. When this sort of trauma happens to kids, they can have a hard time developing a solid sense of personhood at all. They don’t lose themselves because they never formed a cohesive sense of self.
When people with either type of PTSD have a “before” to reference, they may never be exactly who they were before the trauma, but they know they did function at one point. They know they have that capacity. They may be scattered all over the place, but they know that all the parts are there.
Kids who grew up with no “before” reference may not even know what parts they need, so they make them up as they go along. They don’t know how to “just be yourself.” That sense of making it up comes with the insecurity of being found lacking on a very deep level. And with that comes the potential of very deep shame.
Complex PTSD is not yet an officially accepted diagnosis, which means experts in the field have not agreed upon diagnostic criteria, so insurance companies won’t pay for its treatment. For the time being, people who exhibit symptoms beyond those identified for PTSD and not otherwise categorized, can be diagnosed with the lovely term DESNOS: Disorders of Extreme Stress Not Otherwise Specified.
~ ~ ~
I am officially diagnosed with chronic PTSD, but strongly relate to some aspects of complex PTSD.
Mine wasn’t just a run-of-the-mill dysfunctional family. The quick and dirty story is that my mother was often psychotic and was diagnosed as schizophrenic. My father was never officially diagnosed with anything other than gout. But, at a minimum, he was a nasty alcoholic. For me, my psychotic mother was the safer and more stable parent.
I experienced unpredictable abuse and neglect. I was sexually abused as a very young child. I was terrorized by my father for a number of years. And I experienced a life-threatening assault and rape by a stranger when I was in my early twenties.
This is not a justification for my condition, but an explanation. Seeing this in writing helps. It reminds me that I’m not just an oversensitive wimp, and almost convinces me that my remnants of shame are unwarranted.
Almost.
Our comfort zone. It’s safe. It’s reliable. It’s anxiety-neutral. By definition, it doesn’t challenge. It’s shuffling around the house in slippers on a rainy afternoon. It’s default mode.
For the most part, we’re not even aware of it until we near its edges. But sometimes we reach the border and make a quick dash over it for entertainment’s sake. We scare ourselves for fun, for the adrenaline rush. We tell ghost stories over a campfire. We tentatively make our way through a dark haunted house, giggling in nervous anticipation of a jolt to our system.
We wait in long boring lines in exchange for a few minutes of screaming hysteria as we drop off the edge of the earth on a roller coaster. We read horror stories and pay to see the latest slasher movie.
Fear as entertainment is a vacation from the predictable. We enjoy it because it’s temporary. When it’s over, life will be as it was.
Then there are the excursions from our comfort zone that are meant to test us and, ultimately, expand the range of our ease. Sometimes we’re forced into these settings and sometimes we feel honored to be invited. Working with people who seem weird to us, giving a speech, feeling so uncomfortable hearing a casual racial slur that we have to say something, even if it is socially awkward. These things push.
Others things pull. Good teachers, the mysteries of another culture, the pursuit of a childhood dream. These trips aren’t meant to allow us to go back to life as it was. They are meant to change our perceptions of ourselves and our lives and, perhaps, to expand our comfort zone to include more of the unpredictable. Ropes courses, leadership seminars and diversity workshops are deliberate pulls. They are designed so participants can challenge their assumptions about themselves and the world. A fear is confronted and we gain confidence in a larger arena.
I sense that most people have comfort zones; these big cushy bubbles they live in. Sometimes they take little vacations from them as entertainment; sometimes they push their limits to become something new or stand for something bigger than themselves.
All these steps are admired to some degree. In fact, not taking them is seen as at least a tad shameful. Not willing to ride the roller coaster or watch a horror film? Forgivable, but you’re still a bit of a party pooper.
But what about when someone is faced with a real-life horror? The world wants to see them as brave, either through stoic acceptance or a transformational learning experience. How many cancers are “bravely fought” and add new meaning to life? How many amputees fight back to a near-normal life and live with a newfound appreciation for their intact abilities? When something awful happens, we want to see the warrior emerge. We find inspiration and, therefore, comfort in those who have overcome huge obstacles.
Those of us with cancer, who have been raped, or who have endured domestic violence aren’t called victims anymore. We’re called survivors. It’s supposed to be more empowering, which is supposed to help us move forward. We’ve been rebranded as people whose horrors have somehow focused and strengthened us. Survivors, after all, have found a cause outside themselves, or a heartbeat within themselves, that directs their moment-to-moment existence. They may have their doubts and continuing struggles, but they move forward. To everyone’s relief.
Sorry, but this does not fit for me. I’ve been victimized. I know that I’m supposed to consider myself a survivor, because I’m so “high functional,” but I don’t. It’s too soon to tell and I suspect it will always be too soon to tell. I could have easily ended up as a homeless woman who wears her underwear outside her jeans — and I’m afraid I still could. I have a warm place in my heart for such women. They’re human. They count.
And I have a problem with that moving forward thing. By definition, PTSD is past-oriented and people with PTSD often have a foreshortened sense of the future. I know I could die at any minute, or the apocalypse could be in the very next frame. So what’s left? Now and the past. The most intense aspects of my past were shit. They were powerful enough to rewire my brain so that my now is a little unpredictable, too.
~ ~ ~
So how does one live with that? My now has been a matter of moving, in some direction, trying to escape the pile of shit attached to me. My strategy, until a few years ago, was to keep my shit beautifully packaged. I viewed it as a large box covered with handmade paper, tied to me with cotton string. Others found it interesting, but it slowed me down.
On the wrapping paper were lovely handwritten narratives of what was inside. The handwriting was very small, however, so I had to let people come close to read it. “There was the time when I believed my dad was going to kill me by slamming me against a wall, choking me, and forcing me to tell him that he was smarter than me.” “There was the time my mother believed I was a witch and knew all of the answers to her problems. But then she changed and thought she was the Virgin Mary and didn’t recognize me anymore. She signed into the psych ward that way.”
I have always had interesting stories to tell about my life, but I’m careful about introducing them. Not everyone can handle them. Those who can’t, pull back. Sometimes kindly, sometimes with obvious vulnerability of their own, sometimes dismissively.
Those who have accepted the facts of my life often find me admirable for surviving, even thriving, in spite of it all.
You might think I would find that comforting, but I never have. It creates, or emphasizes, the distance between us. They see triumph over past obstacles, whereas I experience the continuing vulnerability of walking a tightrope. There is no point of completion, no sigh of relief, no victory dance in the end zone.
To me, my life has been defined by vulnerability. My greatest achievements have only been efforts to prove to myself that I’m not a wimp. My moments of deepest shame have been when I’ve been overpowered by others, or by my own neediness.
Even after achieving a level of stability in my life as an adult, little things would happen that would leave this “professionally respected, world-traveling” woman collapsed sobbing, shaking and cowering in a corner. I would emerge disoriented, emotionally spent, confused about the intensity of my feelings and really, really ashamed. Why would this happen? I mean, I had had plenty of therapy. I seemed to be doing well. Had I actually flunked? If so, I was quite the fraud because people would comment on my strength. Was I really, deep down, crazy? Given my mother’s history, this thought was terrifying.
These were flashbacks, a symptom of PTSD, but I didn’t know it. I now recognize them, and that does help. I understand what’s happened, which provides some logic to the experience, and that makes me feel less crazy. It does not, however, make the flashbacks feel less random. And I have chronic PTSD, which means it’s not going away. Although I’ll continue to learn to manage and live with it, I still know that I could be yanked back to that hellhole at any moment. That fear is a part of my days, my nights, myself.
~ ~ ~
I awake every morning engulfed in a familiar fog. I come to consciousness and am at several different ages at once. I am three, I am eight, I am thirteen. Those ages were unhappy times. Each contains a moment of horror that I sometimes relive through random flashbacks. My past is not a solid foundation upon which I stand to face each day. It’s a surface of wavering, uneven layers of memories and vulnerability that greets me each morning. I open my eyes and simultaneously sort through it all and make sure it’s in order. Things may have moved, but they’re all here. I made it through the night. I step on this shifting surface and find my balance, anew. Again. Okay, time for coffee.
~ ~ ~
I react to the world as I do because I’ve had my personal safety violated, which also makes me the type of victim that many need to call survivors. Otherwise, we make them uncomfortable.
They need us to move on, to be heroic, so they can be inspired and comforted by the acceptable ending to our saga. Recognizing that someone may be living in a continuous state of injury is too depressing and makes them feel powerless. And feeling powerless is scary.
But the fear of powerlessness is different than fear as entertainment or the fear of reaching out to expand one’s sense of competency in the world. This is the type of fear that invades and dissolves your comfort zone, leaving you bare and vulnerable. It’s terrifying.
Powerlessness is not a state that many people choose to stay in for very long, so they move away from it. They explicitly or silently tell those who are injured or grieving to hurry on to the hero, or at least the stoic, stage. Get up. Get over it. Get on with it.
“Hey, sorry for your problems but don’t let this change my life or my sense of safety.”
But that momentary terror of powerlessness? It’s just a whiff of what it’s like to live with post-traumatic stress disorder. Because, with PTSD, there is no comfort zone. Ever.
Post-traumatic stress disorder is both a result of randomness and a source of it. It is a conditioned reaction to living in terror of the next horrible event. It also creates apparently random physical and emotional reactions to routine life events. You can’t trust the world and you can’t make sense of your reactions to it. Nothing fits together in a logical pattern.
It’s enough to make you think you’re crazy.
As a child, our family often appeared normal to the out-side world and, in fact, great effort was put into pulling that off. But I grew up with the distinct understanding that there was the outside world, and then there was home.
The familiarity of our house had a certain level of comfort, but it also meant being on guard. I could never quite relax because incomprehensible and excruciatingly painful things happened at random.
At the breakfast table one morning, my father ended a seemingly calm discussion with my mother by throwing a cup of scalding hot coffee into the face of my younger sibling, who was sitting in a high chair next to him. He never even looked at the baby. As my mother jumped up to care for their screaming child, he said something to the effect of, “I told you I was done talking about this,” and walked off.
I felt guilty because I hadn’t been paying enough attention to stop this from happening. We were all supposed to watch out for the baby. I knew that.
I was eight or nine.
~ ~ ~
A key element of PTSD is living in constant anticipation of the next bad thing. The technical term for this is hyper-vigilance. It’s an over-the-top awareness of any possible sign of impending chaos.
Chris Rock does a wonderful piece about always being on guard for racism that explains hypervigilance perfectly. He says he could be sitting down with Regis Philbin doing an interview about his latest movie, a kid’s cartoon show in which he does the voice of a zebra, and Regis could pull out a pencil, stab Chris in the neck and say “take that, ya fuckin’ nigger!” And Chris’s response would be “I should have seen it coming.”
~ ~ ~
Alfred Hitchcock said, “There is no terror in the bang, only in the anticipation of it.” That may be true for movies. In real life, for those of us with PTSD, the bangs are as bad as the unrelenting anticipation. The bangs are a measure of how bad things could get. After awhile, a line was crossed and I, like Chris Rock, knew that anything was possible.
Being hypervigilant is like being trapped in a haunted house, always anticipating a shock.
The anticipation is so high that even minor events can cause a major jolt. A clanging pot or a coaster falling to the floor can cause me to jump and gasp. It happens at home, mostly, but once I cowered in a grocery store line when the conveyor belt started and caused a bottle to topple.
The woman behind me kindly put her hand on my shoulder and said, “It’s okay.”
I know that jumping at little things makes no sense. Doing so in public is embarrassing. But there is no decision involved. I can’t stop myself. It’s as if my body lives in a parallel universe. This is called an exaggerated startle response and is so deeply rooted that it is rarely relieved, no matter how well PTSD treatment goes.
On the other hand, the exaggerated startle response is the basis of the only source of humor I’ve ever found in PTSD:
Why will there never be a “Race for the Cure” for PTSD? Because the starting pistol would cause half the runners to hit the ground in panic.
Okay, so I’m no Chris Rock.
So I have a bad case of nerves. Why can’t I just get on with life? If you’re wondering about that at this point, I understand. I’ve asked that question most of my life.
As I’ve come to know myself and PTSD better, I’ve realized that I can’t just get over the bad things that happened to me because, well, they aren’t over. They’ve become ingrained in my being and I’m still living them as I live my present life. It’s like living life on a split-screen television. One section is my present, in which I go about my life as a professional, middle-aged, middle-class white American woman with a Ph.D. On the other side is the past, a montage of clips from my childhood, the theme of which changes and may or may not relate specifically to what is happening on the current side of the screen at any given moment. The line that splits the screen is not static. Sometimes it crowds my past into a narrow strip that hums and flashes but rarely distracts from my current life. Sometimes it crowds my current life into a mere thread just wide enough for my next breath.
It’s usually somewhere between those extremes, but it’s exhausting to live two or more lives at once.
~ ~ ~
Everyone has memories of good and bad times and can voluntarily call up some of them, then set them aside again and live in the present. Some people dwell in the past out of choice or habit. They may relive their glory days or cultivate a past hurt. This may even get in the way of their current happiness.
But this is not the same as having intrusive thoughts of traumatic events or reexperiencing them.
Now, whatever you do, do not think about a pink elephant. So, what did you just picture? A pink elephant. You’ve had people do this with you before. I just planted an intrusive thought in your mind. Now, imagine that pink elephant popping into your mind every five to ten seconds. Imagine coming to wakefulness in the morning and, in that split second before you open your eyes, you see pink elephants and wonder if they are in the room.
For me, the pink elephants are a part of life.
Sometimes they are just irritating distractions, like a song stuck in my head. Sometimes they are more real than my current surroundings. Sometimes I can’t even read, not with the roar of a herd of stampeding pink elephants throbbing in my brain.
The elephants are constant, uninvited companions. Much like hypervigilance, these intrusive thoughts are unrelenting. They are the past that is always there. When they start to squeeze out the current side of the screen, taking over much more of my consciousness, they’re worse. It becomes hard to keep up with my moment-to-moment present, much less absorb new information. Everyday life becomes an onslaught of demands I can barely manage.
~ ~ ~
I have a current life full of relationships and responsibilities. Maintaining it takes energy, focus and an ability to be present. When the past swells and presses against the present, it takes an incredible amount of effort to contain it enough that I can do the minimum required in my current day-to-day life.
At those times, it’s hard to contain and it’s hard to explain. I recently saw a dear friend who I’ve known for almost 30 years. She has seen me at my best and at my almost- worst. We were catching up over coffee at her condo overlooking Lake Michigan. We’re in our fifties. We have notable jobs, life partners, changing bodies and fluctuating retirement plans. We talk and then get to the real question . . . so how are you?
And I found myself talking about the time when I was thirteen and my dad decided I hadn’t dried the dishes well enough. He removed my pillow from its pillowcase and replaced it with all the flatware from the drawers and all the chopping knives. He put this sack of randomly sharp hardware at the top of my bed, ordered me to put my head on it and said I needed to sleep that way all night. He would keep my door open and check periodically to make sure I hadn’t cheated and moved off the metal. Of course, I was terrorized and awake all night.
My friend kept her eyes on me, without blinking, and then asked, “So how are you doing with all that?”
How do I answer that? It’s more than 40 years after the fact, yet this is the most pressing emotional issue of my life right now. It seeps into my days and floods me with fear.
I looked at her and felt the gulf of both time and experience. I felt ashamed, even though this is a friend who wouldn’t shame me. I also felt very alone. Somehow there must be a way to integrate my then and now, but I haven’t found it. I was comforted to know that this sliver of my current life, this friend, would not be pushed away by my past, but I couldn’t really meet her in the present, either. We just trust that we will again at some point.
~ ~ ~
Somewhere between swamping the present with the past and punctuating it with exaggerated startle responses are triggers. Triggers can be specific or general. They are sensations — a sound, a smell, a sight — that suddenly yank me back to the past. There is a cause-and-effect relationship that snaps into play but can’t always be explained. I may have no clue why I’m suddenly cowering and confused or I may know that X always seems to set me off. It may make no sense though because I can’t remember the original event that sparked the trigger. Or, the anxiety around the original event may have become so generalized that seemingly unrelated items or events can set off a response.
Fortunately, my responses to triggers haven’t been dangerous to myself or others, unlike those of many combat vets who were trained to react violently in self-defense. My responses may terrify and humiliate me but, to others, they just make me quirky. I tell myself to get used to it. So far I haven’t.
For example, I have a thing about boxes and miscellaneous junk left in the hallways of my home. This trigger was a surprise for me and caused major emotional spikes before I realized why it was so disturbing.
They blocked my way. They made me feel trapped. I was going to get raped and couldn’t escape.
I know it’s a huge illogical leap from, “There are boxes in the hall” to “I’m about to be raped,” but that’s my emotional reality. I remind myself that it’s illogical, which is somewhat calming, but often not enough. So, the people I live with (and who love me) take care to remove what have become known as “the scary boxes in the hall.” We’ve determined that, if I don’t have a three-foot clearance, I start to get edgy. Edgy may be manageable, if uncomfortable, but it depletes my emotional reserves. So, if a glass is dropped and shattered, or the cats spring into a fight, I may catapult from a startle to a flashback. So we try to manage my space.
~ ~ ~
I also have a thing about spots and splatters.
Mustard and other yellowish things are bad. I’ve always known the source of that trigger, however. One day when I was five or six I was eating something and got mustard on my white shirt. It caused a lot of screaming from the adults around me. I tried to wipe it off, but that caused more screaming and I had my arms yanked to the side. It seems I also had mustard on my fingers so, instead of cleaning my shirt, I was just smearing it.
The shirt wasn’t mine. It was my cousin’s. My mother had borrowed it from my aunt so I would have something nice to wear that day, since I only had old clothes. My cousin had good clothes. My aunt and cousin saw me stain the shirt.
Why do I remember this? Because it gave me the reputation of being a messy eater, something I was reminded about as late as age fifteen.
So, I have a sensitivity to ick. I’m sure this was also reinforced by the going-to-get-ice-cream-in-my-dad’s-new-car incident. I’m not even sure which came first, the ice cream or the mustard. But, at some point when I was quite young, my dad got a new car. (This was the only car we had as a family but it was clearly Dad’s Car.) My parents had a big fight about taking us kids out for ice cream cones. My dad didn’t want us in the car. My mother insisted we could go out as a family, get ice cream, and have fun. Just like the neighbors.