faux pas

Sometimes I feel fake.
Sometimes I feel like people read my blog and say things like so what and big deal and what's so hard about that? I've been inside of my head for so long that this life feels completely normal and I have a hard time convincing myself that I'm different and that what I go through on a daily basis is not in fact normal at all and I have to remind myself that just like Marla did for me, my writing could be helping others to feel like they're not alone. It could be helping someone understand PTSD. Understand me.
So I trudge on.

I ran across this article today: What is it like to have PTSD? written by a veteran.
A large majority of people know what PTSD is because of the amount of soldiers who have come back from this war with PTSD. A large majority of any new articles or findings or tools for people with PTSD are geared towards soldiers.

I'm exhausted today. I didn't get any sleep last night...none at all. I had horrible nightmares that didn't stop intruding in on my thoughts until well after 1pm today. I'm tired, so my thoughts are becoming drained and irrational and I thought "I'll read this man's blog and then I'll see what it's really like to have PTSD, he'll put me to shame."

So I read it. And he has the same type of PTSD I do and he's saying the same things I've said all so many times.
He fought in a war, I fought in my life.
No, it's not the same, but a trauma is a trauma and we can't say that one person deserves to be labeled traumatized or having PTSD and another doesn't. Trauma can still break you, all the same. Leave you fearful of every minute of every day.

His words, are important, so I wanted to share them with you.
They might help you. They might help you understand someone you know.
They might make you think twice before you tell someone to "get over it" or label them as crazy.


What is it like to have PTSD?


I thought I would write a personal entry today on what post traumatic stress disorder is like for me. We all have our own unique experiences in life so my example may not be like others. Besides, I don’t just have PTSD. I have agoraphobia and depression alongside with complex PTSD. My story might be very different from your own. If it is the same as your own, I would like to hear from you.
When I get up in the morning, my goal is to not leave the apartment. I feel safe inside, I have established my own safe house in what appears to be a combat zone outside of my door. I know where my trusty knife is, I know where people will exit and enter the apartment. I will not be surprised by people coming and going. If the shit goes down, I am in a good position to defend myself because this is my turf.
At any moment a loud explosion will go off and shatter my sense of peace. It will cause me fear and anxiety. My adrenaline will pick up, like it always does when there is a explosion. I will have to look around and act quickly so I can see how many survivors there are to this blast and hopefully I will be able to find the enemy that set off this explosion. I don’t have any real weapons though so it is difficult to execute a proper defense. All I have is my pocket knife and this scares me. I wake up in a panic some nights because I cannot find my M-16 rifle. For years it was right next to me, but it has been almost a decade since I have turned my weapon in to the United States Marine Corps armory on Camp Pendleton.
When I am on the bus or train in this city, I am always looking around. Over my shoulder, I take quick glances at what is behind me. When I am not looking over my shoulder, I am looking straight ahead, to the right and scanning to the left. I must assess who is a friendly and who is the enemy. At any moment I will get hit by incoming fire so I must remain vigilant. I just hope this bus doesn’t run over another metal construction plate in the road. Last time it did that, it triggered panic so bad that I was put in the hospital last year. This year’s goal is to stay out of the hospital and I intend to reach my goal.
I hate surprises. I get agitated when accidents happen, when loud unexpected noises are created. I don’t like being surprised by people, phone calls and the like. I haven’t called my family at all this year and I know they are worried. They keep calling me but I don’t pick up the phone. I feel terrible for it but I just don’t want to talk. 
When I look at other people, I often see the faces of my Marines amongst the crowd. I’ve been through this for years now and I know that those faces are just an apparition, a ghost of my past. Sometimes it is comforting to see those faces but today it is not. It makes me fearful.
The explosion will come. I know it will. Just like that one night in the desert, where it seemed to come from nowhere. The peace has been shattered but I must continue to fight and protect myself and those around me. The only problem is that there are no explosions here. There is no enemy. There is no cause for concern. This fear and panic is all self created and is crazy to others. So I should keep my mouth shut about this so others do not think I am crazy. I have already been to the hospital more than a fews times and I do not want to go back. It’s scary being there...being held against your will. Having family and friends to come visit you and the whole while feel like shit for being in that situation.
I know I have to get a job soon or there will be trouble. I am living off of my $970.00 disability check in an expensive major city and I am barely making it. Yet I cannot explain my gaps in employment because if I had to be honest, I would have to reveal my disability, my hospitalizations, my medicines, my fears and everything that I want to be kept a secret. My family wants me to ask the VA for more disability money but I am so ashamed. I don’t understand why I have to go through this. I didn’t do anything wrong yet I feel like I am being punished. At times I wish that explosion took my life. I wish my body had been turned into pink mist spread across the desert sand. 
I’m not suicidal today and that is a great feeling. Tomorrow the thoughts will likely return but for now I am going to hold on to this feeling and try to get it to stay. I need to keep moving forward instead of treading water in my apartment. I don’t know what I am moving forward towards but I must keep moving.
Some people will read this and think, “What a nightmare.” Well it’s not a nightmare. It is my life. It is the way it is and it is, what it is.

Relentless brain.

The peaceful quiet of the night is unforgiving and it’s during that silence that I question my reason of existence at all.

There are things about PTSD that we just don’t talk about.
We don’t talk about it, because people don’t want to hear it.
They actually don’t want to hear a large majority of it – but here’s the relentless truth: one of the symptoms of PTSD is suicidal ideation. There are some days when a person with PTSD simply sits down and says “What’s the point?”. Yes, the person who is in constant fear of dying from some horrible accident some days just sits down and thinks that the easiest way of getting out of their head is to end their life.
Most of the time it’s just that – a simple thought of “I don’t want to be here anymore.” I’m well educated on PTSD and I’ve been living with it for longer than I can remember (to be honest, I don’t know a time in my life that I didn’t have PTSD symptoms) so I’m well aware of these intrusive thoughts and I know the difference between the simple thought at the end of a day and when I should fear myself. I think the thought, most likely have a bit of an attitude for the rest of the day, go to bed, and wake up ready to face the next day.
I don’t actually fear myself in these moments of defeat, but in the chaos of our PTSD brains it crosses our minds.

I can tell you it’s exhausting to be in my head, but you’d never quite fully grasp those words unless you were in my head. When I was younger I struggled a lot with this thought. I knew that my thoughts were different than other people’s thoughts and I wasn’t ever able to explain myself in ways that people understood.
It’s not that bad, get over it.
I couldn’t. And it was that bad. And I used to spend my days distracting myself by envisioning this alternate reality where I had this power to simply grab someone’s arm and project the images and thoughts from my head into theirs, so they could see what I saw.
So they’d stop telling me to stop being a baby and to suck it up and to just leave the door unlocked or the window opened.

But my imagination couldn’t become a reality so I had to continue to muddle through life with my mouth shut, suffering through the attack on my brain that occurred on a daily basis.

“Dr. Jonathan Shay, a P.T.S.D. specialist, thinks that even calling it a disorder is misleading: P.T.S.D. is an injury. There are degrees of damage, ranging from standard combat stress, which can be treated with a few days’ rest, to full-blown complex P.T.S.D., which is very difficult to treat, let alone cure. It is best understood, though, as a psychic wound, one that can be crippling, even fatal, in its myriad complications.”


One time when I was out to eat at my favorite restaurant, I was triggered by a couple who sat close by that was having a heated argument. My brain was tired that day and my defense on my brain wasn’t very strong. I immediately recognized that I was triggered and had the other person I was with distract me, but sometimes, no matter how well versed in fighting my own battle I am – it’s not enough.
I kept flashbacks at bay, but my body still reacted. The world got loud and adrenaline surged through my body as if it were needed for survival. It became hard to concentrate and by the time I left the restaurant that night, I was 100% exhausted.
My brain grasped at that memory of a trigger that lead to a memory and stored it away as valuable information. Every time that I’ve gone back to that restaurant since that day, my senses are heightened and I feel the urge to run for my life.

My brain is relentless, unforgiving. It thinks it’s doing the job that it needs to do in order to survive. It’s all it knows. Some days, it’s really hard to see the silver lining. Some days, I feel like I’m just too damn tired to wake up and do it all over again.

The other thing we don’t “talk” about is our foreshortened sense of future. Obviously no one can predict what the future holds but some people with PTSD have a problem with seeing the future at all. I wrote the following on a discussion I was having with other people with PTSD:

I'm 27 years old. PTSD has been all I've ever known, so it's not like I yearn to get back to the "normal" way that life used to be or anything - but what I wanted to talk about/ask is in regards to the fact that I can't "see" past tomorrow. 
I know that there are many people who have been living with PTSD far longer than I have and I wonder: does it get any easier/what have you done to be able to "see the future"? I know I have to go to work tomorrow and that this weekend I may spend a night with friends watching a movie and that in May I'll be an aunt again... but in reality, I expect to die this afternoon. Or on my way home from school tonight. Or tomorrow morning. (Not by my own hand, but by some wicked twist of fate) I know that I have plans that are "future based" (like a set date for an event I’m attending), and I look forward to those things but I never plan on living that long. I actually spend a lot more time thinking about it than I ever let on to. It's not something I consciously decide, it's just how it is. I can't see ever getting married or having a family or watching children grow or being retired. I WANT those things, but they don't ever feel attainable. 


I can’t look forward to a life that I can’t force myself, no matter how hard I try, to believe exists. I want it to exist. I want to look forward to it, but I can’t see it. On the rare occasion that I do see a glimpse into what “could be” I grab ahold of it and store it away as a reminder to myself that it could happen. After all, I am 27, I’ve made it this far and that’s far longer than my 18 year old self would have predicted.

Now once again it’s midnight and I’ve avoided doing all of the things that I’m supposed to get done because this nagging at the back of my mind said “get this out”, so I did.

I recently saw a neurologist at a sleep clinic, hoping he could shed some light on the subject of PTSD sleep that most doctors don’t have the slightest clue about. He wasn’t too versed in PTSD but he did understand how the brain physically works in those who have PTSD when it comes to sleep. After drilling me with various questions (sometimes repeatedly) he assured me that he 100% believed that I had sleeping problems and in the same breath told me that I was fighting a battle that I couldn’t win.

He said “Your amygdala, the fear center of the brain, doesn’t sleep when you do. It’s over active during the day and you seem to have a good awareness around that and what you can do to counteract it, but when you sleep, it’s still going. It’s overproductive, releasing unnecessary levels of adrenaline into your system at unnecessary times. It’s watching your dreams and gathering pieces of them that it deems dangerous and it’s waking you up for protection. We can’t change that.”

We can’t change it, but we can drug it. So now, once again, Prazosin is added to my drug cocktail – normally diagnosed for high blood pressure, it’s supposed to reduce the amount of adrenaline that my dear amygdala releases while I sleep, hopefully reducing the amount of times that I wake up during the night.
I’ve been prescribed this drug before, but by a doctor who had absolutely no clue as to why she was prescribing it. No one could tell me why it worked so I wasn’t comfortable taking it. So this neurologist explained the how’s and why’s and then I asked the question that had kept me from taking the risk of a new drug the last time I had possession of it.

I was afraid to take the Prazosin last time.
Why?
I was afraid it would kill me. I was afraid to go to sleep and die.
It won’t kill you. You won’t die from taking it.
Are you SURE?
Yes, I’m sure.
Ok, I’m going to trust you on this.
Ok.
And I’m also going to blog about it, so you better not be lying.
I’m not.

Suicidal ideation, foreshortened sense of future, fear of death. Confused yet? Yeah, me too. 

For more information on PTSD sleep you can visit the website for the one and only sleep center devoted to PTSD sleep here. Unfortunately it's in New Mexico and requires (for best results) that you stay either at the sleep center or live near it in order to actually benefit from it so it's officially #1 on my list of things to do if I win the lottery/publish a book.
A podcast on iTunes relating to PTSD and sleep is what lead me both to the existence of the sleep center and the drug Prazosin but I can't currently find it (I'll keep looking).

Here is a link to the article that the quote used in this post was obtained from. It talks about the suicide of a Marine who suffered from PTSD.

as you were.

You know how I'm always going on and on about the domino effect that my brain can sputter out? How I'm conscious of it most of the time and know what to do in order to divert it? It's not that black and white.
I'm on a medication called Naltrexone. I started it a good 6 or so years ago, back when I had a PTSD therapist. She had gone to a conference where someone spoke of the drug (which the main use was for recovering alcoholics and heroine addicts) used in small doses to minimize the trigger response in PTSD. It was still in trial and not yet in the US, but it sounded promising. So I took the paperwork that my therapist had given me on the research and convinced a psychiatrist to prescribe it to me. It was as simple as that.

The drug isn't some sort of catchall for my mind. It doesn't always go the way it's supposed to. But it sometimes blocks things or gives me an minute or two heads up, and I'm grateful for that. If something powerful is coming through my brain, it sends a dramatic shudder down my spine to warn me. "Hey, we can't hold this one back much longer, do something NOW or they'll break free." (They, being the memories or triggers.)

Class last night goes as follows:
I'm fine, my head was full of a book I had listened to on my drive to school. (Thank you Audible for being awesome) I sat alone in the lounge and cautiously watched everyone else chatting with each other. Then we started shuffling into class.
Someone in front of me smells like a lotion that is the same as a bath & body soap scent. It seeps into my brain without me even knowing it, but stays a block of unlocked connection. A shiver runs through my body, a temporary warning sent by my Naltrexone. I push past the lady who wears it and methodically take the same seat I've sat in for the last 3 years.
I manage to distract my way out of the scent trigger but now the teacher has placed us into small groups and I have to move to the other side of the room. The only chair left at the table that I am to occupy has the back of  the chair facing the door to the hallway. This would normally be mostly ok because the door is closed so it's not posing as a huge threat and I can block the thought. This teacher gets warm easily though, so she props it open. I immediately feel threatened and can't sit still in my seat. I'm constantly swiveling my chair to check the open door. My back is tense and my body hums with fear. Once again shudders run through me almost methodically. It might appear to an outsider at this point that I am having some sort of small seizure.
Jayne sits next to me and quietly asks "Are you cold?" I shake my head no in response but don't explain.

An hour slowly ticks by and I can't concentrate on what the teacher is saying because hypervigilance has kicked in and since I don't feel safe, my body feels as though I need to have super human hearing.
I can hear every tiny noise not only from inside the room, but in the hallways and in the lounge that is fairly far away. The world is suddenly louder than it's meant to be and I can only hear the ticking of the clock and someone tapping their pen and someone bouncing their leg and footsteps in the hall and someone spilling their M&Ms in the lounge. I just need to sit somewhere else, I sink down in my chair. Every break in silence makes me jump in my seat.
At the hour and a half mark the teacher announces that we will be taking a break after we are done answering a series of 30 questions (marking them agree or disagree) and we are to reconvene at 7:05. I glance at the clock and it's currently 6:55 and I've only answered half of the questions. I need that break, badly. My leg starts to bounce and I suddenly can no longer sit still in my chair or concentrate on what I'm reading. At this point, a heard of pink elephants are stampeding through my brain and I have to reread the questions several times before I can comprehend them.

From NPR and WBEZ Chicago, this is Wait Wait, Don't Tell Me the NPR news quiz. I'm Carl Kasell and here's your host, Peter Sagal.
I turn on one of my favorite episodes of a podcast that I listen to every week without fail. I need something to calm my brain before I jump into my audiobook because otherwise I risk not being able to actually pay attention to what's being said. It only takes about 10 minutes and I gleefully turn on the book I'm currently listening to Where She Went. By the time I get home, I'm calm and my brain has leveled out but I'm exhausted and still haven't slept. It's 10pm and I can't push myself to stay up any longer. It can go one of two ways, either I'll get a good solid dreamless 8 hours of sleep or I'm subjecting myself to extra hours of torture. I climb into bed and stack my pillows so close to my body that I can't move. I pray it works and fall asleep.
The latter of the two scenarios happened. The night was a horrific mess and I could barely pry open my swollen eyes enough to see what I was doing during my morning shower.

I'm exhausted and my brain is following suite. I can usually handle the radio, but with my brain as weak as it is, I'm putting myself at risk for triggers. My week or two of bad sleep has come at a bad time because the morning show that I use to distract myself while I get ready for work in the morning has been fired and my cheap/old alarm clock radio in my bathroom refuses to get in any other station. (This lead to me spending a bit more money to buy a new one, complete with iPod connection for the days that the radio doesn't want to cooperate in getting reception).
The drone that has replaced my favorite morning DJ's has no personality and rarely talks. So he leaves me susceptible to a flood of memory. Songs are glued to memories just like scent is. There aren't many bad ones, but a song can lead to a memory can lead to a time period can lead to a memory that isn't so pleasant.

My mom and I used to listen to Reba McEntire's album For My Broken Heart (on cassette of course) nonstop, always trying to figure out exactly what the plot of every song was. Listening to The Night the Lights Went Out in Georgia a million times. She drove a Cougar back then.
My brother Tony introduced me to the song by Jason Michael Carroll called Alyssa Lies. He drove a stick shift truck back then and we were driving to see my uncle who lives in Muskego.
While my friend Quinn was at boot camp we both liked Lonestar's My Front Porch Looking In and would often reference it in the letters we wrote back and forth to each other while he was gone.
One time when my Aunty Dar was visiting we discovered a song by James Otto called Days of Our Lives and became obsessed with finding a copy of it.
Michelle and I used to listen to songs like Tim McGraw's Don't Take the Girl and Faith Hill's A Man's Home is his Castle nonstop when we were 7 or 8.
My baby sister used to listen to Tim & Faith's It's Your Love and dance around the living room for hours when she was 3 or 4.
My friend Shelly and I listened to Mambo #5 nonstop during a camping trip we took to Mauthe Lake when I was 15.
You get the point, the songs are all there, bound to memories - waiting to jump out when I least expect it. Most of the time I can just smile at what it makes me remember and move on with my day/hour/minute, but when my brain is this weak, it threatens to open doors that should remained closed and locked.

So, songs bind to my memory, but I'm assuming that's just the same for everyone else. I can't usually spit out singers and song titles the way that I can actors/actresses and movies. I'm assuming it has something or another to do with my photographic memory. And neither of the two probably have nothing to do with my PTSD. For the most part, my iPod touch is my savior. It's made my life that much easier to manage and without it I'd be lost. I'm already trying to figure out a game plan for the day it decides to no longer turn on (since I assume from it's age that time will be sometime soon).
Worst case scenerio always at the forefront of my mind.  But that's just how it is. 

just like everyone else.

I heard a term this week that made my nerves dance. I was told that I could wait, suffer through the fact that I may not get a break at work, just like everyone else. 
I'm not entirely sure how many times I'll have to say it before people start to comprehend, I'm not like everyone else. Everyone else, can go home at the end of their work day and throw their coat on the couch and slump down in a chair after grabbing a drink and say "That was rough" and move on with their life.
What do I have to do in order to make people comprehend that if I need to walk away for five minutes I need to walk away for five minutes. I don't want to walk away. I need to walk away. Because if I don't, my brain takes off in a furious mess of flames and smoke and I can no longer function.
Unexpected (and I say that as if there is ever a time as though it is expected, but there really isn't) trigger reaction can go two ways.

1. Is that I have this (sometimes impossibly small, sometimes generous - and in generous I'm talking 15-30 minute) window of opportunity. If I take that window, I can use one of my "tools" to distract my brain back to reality. I can use my phone to distract me in a million ways, I can use my iPod to listen to a song that I have to force myself to remember the lyrics to, I can listen to part of an audiobook, I can watch a smidge of TV, I can have a small conversation with whatever person is nearby, I can write a few sentences of a letter or my blog or my novel - even if it's just on my phone or in my head, I can count cars in a parking lot - picking out patterns of colors. Do you get my point yet? It takes me all of five minutes to get myself back to reality, most of the time - especially if I'm only allowed those five minutes before I need to get back to the real world. If I'm not literally forced to stand in one spot and let my brain turn into a memory hungry monster.
I've been doing this for forever. I'm really good at it. So good, that even if you followed me around for an entire week, you'd barely even notice anything out of the ordinary.

2. I don't get my five minutes within the time allotted. My "I need a minute" might not be that big of a deal to you. You might say "fine whatever" and give me my minute. If you don't, it is a big deal because what follows can ruin my entire week. My brain goes into massive overload and what happens is I'm literally left a trembling mess. My brain is on overload, shutting down in various ways - to protect me - and my body is physically responding. My arms and legs are literally shaking/jerking/trembling. I can't type or write or make my hands function as they normally should, I can't speak straight sentences, I can't write down what you're saying to me, I can't remember what I was doing two seconds ago. And this mess? It takes hours to get out of, if I'm lucky enough to have the energy to do so. My body becomes literally physically and mentally drained and it takes all I have in order to go on with any part of my day.

On that particular day, the day where my trigger went past it's window of opportunity and my day followed result number 2, I had to go to class after work. I had to drive an hour to get from work to school, I had to function enough to listen to 2 hours of lecture and remember what I had been taught so I could apply it to my work for the next week. By the time I walked out of the doors at work that day, I had marveled at the fact that I could even bring myself to do such a thing as move one foot in front of the other.

It isn't always A+B=C. Sometimes I have no control. Sometimes one really big thing can send me straight into a convulsing mess and there was no getting away from it. Sometimes the threads of memories that are being linked are harmless and I don't need to step away in order to get away from it. No one instance is like another. No one instance is predictable.

I can't even begin to make you comprehend the massive amount of memory that goes through my head in one day... even just within the first few hours of my day. I often wonder on my drive to work "What is it like to be able to just forget all of this stuff... to make it til lunch time without having to draw my weapon and intimidate the enemy?"

Marla Handy writes the following passage in her book titled No Comfort Zone on her experience living with PTSD:
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 to 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 heard of stampeding pink elephants throbbing in my brain.
The elephants are constant, uninvited companions. Much like hypervigilance, these intrusive thoughts are unrelenting. 

Pink elephant, pink elephant, pink elephant, I want to go to sleep.
I haven't slept in 7 days. Yes, I go to bed some time during the night and yes, I wake up to my alarm. But I can 100% assure you that during those hours that I'm "sleeping", I'm not. Not the kind of sleep that counts, at least. I know, because I can't function during the day. Because the underside of my eyes are turning into a reddish purple, because my level of patience is below 10%, because if someone out of the ordinary sees me - their first response is something like "Are you even awake yet?".

So, you're saying, it's almost midnight... why the hell aren't you sleeping?
I'm not sleeping because I'm trying to push myself to the kind of exhaustion where my body has no choice to respond but to fall into a deep slumber. I'm not sleeping because my brain is churning with frustration and anger to the ignorance of the world. I'm not sleeping because people are still pretending that my disability doesn't exist, that it's something we just don't talk about or acknowledge. That I can function just like everyone else.

If we stand real still and don't make a sound, maybe she won't even know we're here...

at the mercy of sense.

Smell binds to the PTSD memory in a way you cannot understand. Seeps deep within our soul and tethers itself to bits and pieces of our mind. When a familiar smell hits me - my body begs me to remember. It dances around familiarity and the guards in my mind go on high alert. My body remembers even when, on the rare occasion, that my brain doesn't follow suit. It makes me anxious and frustrated, like a stuck sneeze. Afterwards my mind plays tricks on me in a "I can give you a clue" type way by leaving phantom smells to follow. Maybe a waft of cologne when I'm not around a single person or the faint smell of hairspray when I'm nowhere near a bathroom. When I can't place the smell the nerves of my body will dance, forcing me to be unsteady, uneasy, trapped in a fleeting mess. My body begs and pleads and sometimes leaves me in a convulsing mess, balled up in the corner of a room.

Even when I can remember, it doesn't usually make for a good day. A smell that unlocks memory also, as I've said before, holds the master key. One door opened leaves all the rest unlocked and ready to be revealed at any moment. The rest of that day officially becomes harder and more challenging. To be completely honest with you, some days it's easier to just give up and become a shell of a human being. Some days isn't worth the fight.
Each day isn't a guaranteed reset either. This isn't Stephen King's 11/22/63, I don't have a rabbit hole to jump through as a way to start over and try again. I don't get to go to bed at night and say "Tonight will reset my brain and tomorrow it won't be sensitive". Sometimes one trigger can have effects that last for days. Doors stay unlocked, monsters running loose wreaking havoc on my brain. Going through each day turns into running a race in mud a foot deep. No matter how much effort you put into it, it seems as though you're not getting any closer to the finish line.

In order to more easily explain my mind, I often speak of the doors. Each door, to me, holds a memory. Inside every memory room, there may be another door leading to another memory. Sometimes it's never ending. My job is to not only keep the doors closed, but locked. Imagine me running around in a mansion endlessly closing doors that other people have seemed to have left open. There's no one place that I can sit in that mansion to keep a watchful eye on every door. Constantly running.

The other day at work I had a customer who was clearly an alcoholic. The minute he walked up I could smell it coming out of his pores. There's a clear difference between the way you smell the day after a big night of drinking and the way that you smell when the alcohol has become a functioning part of your chemical makeup, clear that it's all your body knows. The way he smelled tripped open the Rodney door and my body started to ache in a fleeting way. I carefully watched him, noticing small similarities to the way Rodney had appeared on his bad days. His hair was slicked back, his skin had a reddish tint to it, and when he removed his hands from his pants pockets they trembled no matter how hard he tried to stop them. My mind whirled with memory and as I stared at this man, I remembered Rodney and how broken and helpless he was at times. How he fought the demon and the demon had won out in the end.
You can save him my brain screamed. You can save this one!

I sent him on his way since he had, afterall, only come to see me for computer help. It only took that one small thing to open the gates and let the flood in. The entire day I was sensitive to smell and sound. The world grew increasingly louder as each minute passed. It wasn't difficult for me to hear the conversation of two people who were normally out of earshot. If someone were to talk to me that was standing right next to me, it'd be as though they're screaming. Their words would be muffled with the sound of static, as though a speaker was turned up too loud. Please speak softer I want to whisper. I don't say it, because they won't understand and usually just stare at me blankly and then walk away, confused. I've learned to tolerate the noise, but it doesn't mean that I don't have the urge to go and hide in a quiet room. Sounds can be overwhelming, especially those of screaming children.
It’s not every day that a smell trips me up. But when it does, it just adds to the seemingly never ending list of challenges thrown my way. A smell trigger can be a cologne/perfume (trust me, I’ll be able to pick out your scent anywhere, my mind remembers), a soap (ie Neutrogena face wash will take be back to October 1998), a hand soap, a hair product (ie. American Crew pomade will take me back to 1999)… the list goes on and on. I can understand why some people with PTSD don’t get out of bed in the morning.
It’s safe there. The world trips you up.

Sound sensitivity (brought on by heightened senses from triggered memories), more often than not, can last for days once it surfaces. It sometimes sends me into a maddening downward spiral and it won't be until I dream at night that someone (typically someone from my past who has passed away) will walk up to me in a blank black space and softly place their hands over my ears to muffle out the sound. The world will have gone quiet and I’ll spend my time drawing their image from memory. I'll awake the next day with my hearing returned to normal. Sometimes I see it as a gift from God. She's tired, please help her He'd say to the spirits of my past. He’d send them to fix me, to grant me a few hours or days of relief.

Dear God,
Thank you.
-Erica

a heart so big.

In my world, an anniversary is hardly something to celebrate. My anniversaries don't include flowers or candle lit dinners or smiles. Anniversaries for a person with PTSD is the date of a trauma. You could hide the calendar from me and my body would still manage to remember. I might not connect the dots right away as to why I felt physically out of whack, but my body would remember - causing me to be anxious and nervous and irritable. I'd feel like I had a brick laying on my chest, weighing down my heart.

Most of my days are in summer and fall but unfortunately one of those days is linked to a Friday the 13th. The original date is June 13th, but since that day in 2003 was a Friday and following the horrible events that happened that day, I will not be able to forget that it was that dreaded Friday the 13th.
I did my best to distract myself today. In my spare time I read a book, I listened to a different book on audio when in my car (I often have more than one book going at a time so that I always have one accessible), while at work if there was a lull I focused on the next chapter in a YA novel I'm writing, I watched 3 different TV shows and saw a movie at the theater.
If my brain is busy following a story, it has a far less chance of pushing through memory or pain. It's why I'm able to quote and reference my fair share of movies and actors, why my book shelves are lined with novels and why I never can quite seem to get enough programmed (and DVRd) television.
Despite my greatest efforts, I still cringed and prayed for peace every time someone at work (whether it was a coworker or customer) blabbed on about what day it was. It still was the first thing on my mind as I walked to my car. Memory... is like an obnoxious person who just has to finish telling you their story until they get the reaction that they so desire.


Death can steal a person, make them into nothing but a memory that your brain grasps for. People stay frozen in time, a prisoner in your mind. Sometimes you can pull out a memory at random, sometimes the memory jumps out at you and leaves you balled up on the floor. Death graces us with memory we've never even noticed that we have. We suddenly remember things about people in great detail. Detail that drags us down and beats us until we can't even feel the pain any longer. And that moment you find out that you've lost someone? You'll remember that moment for the rest of your life.

That June Friday the 13th I can remember the way the summer air smelled, how heavy my brown sandals were on my feet, how my knee length jean skirt had a tendency to twist uncomfortably when I went to sit down. I can remember the blare of sirens in the rig I rode in and I can see every street sign that I glanced at while looking for the road that the emergency page had initially called out. If you needed me to, I could draw out the exact set up of the living room that the call was at and how I suddenly couldn't remember how to do something as simple as breathe.

{The next excerpt previously written in a private blog from 2008}

I ran into a friend at school today... someone I hadn't seen in years. Much to my surprise she didn't even look the same. I barely recognized her at all, until she spoke. And her voice? It was what death would sound like if it had the ability to be heard. I stood before her, but my mind was everywhere else. 
In my head I was stepping out of the still moving truck only to be greeted by air thick enough to be able to grab a handful and hold for a moment. And her stale words of "I'm so sorry, Erica" lingered in my ears. That's why the sound of her voice takes me back. Because she was the person to tell me that he had died. She was the first of many that had called to check on me that night and make sure I had heard the news, but the only one that seems to be stuck hiding in my head somewhere, patiently waiting for the right moment to jump out and smother me. 

Reliving moments like those remind me how important life really is. I watch too many people take things for granted and I wish I could take them by the shoulders and shake the hell out of them until they fully understand what they'd feel if they spent all their time keeping their thoughs to themselves instead of sharing them with other people.
You can stop, think about everyone important to you and ask yourself if you'd regret anything if they weren't here tomorrow. You should never have to start out saying "I never told them....". Even the people that you've been standing next to for the last 15 years, you just assume they may just know that you care about them, but never assume. Because regret? It can kill you. And it never goes away.


PTSD may not be who I am, but it definetly has a way of explaining me. And making things seem more controllable. I no longer have to sit in a fit of confusion wondering what I did wrong. I can fix what's broken... I can't fix what doesn't exist. On June 13th 2008, in memory of that date and all it represented, I had a small tattoo done on my wrist. It was a symbol for the word fly. My friend Sarah had copied a poem into a gift she gave me once and it had moved me beyond words.
The poem read:

"Come to the edge" he said.
"We are afraid" they replied.
"Come to the edge!" he said.
They came.
He pushed them.
They flew.

I got the tattoo as a reminder that when I'm pushed to the edge, I have the ability to fly instead of fall. 

caught in the inbetween.

So far, I've made PTSD seem pretty simple. The sad truth is, it's not. The small amount that I've talked about is only the beginning. My days are so extremely complex and unpredictable. The hard truth is, sometimes I don't even know what parts of me are normal and which ones are PTSD.
Does everyone hear the world so loudly? Is everyone this afraid of something that isn't even there? Does everyone have a hard time seeing past next week? Is everyone thinking worst case scenario or jumping to the worst conclusion on a daily basis?
I understand that people fear, I understand they worry, I understand sometimes it's hard to believe we're all growing up. But for me, it just isn't that simple.
There's so many important things that someone needs to know about the reactions and sensitivity of a PTSDer - two of those things are hypervigilance and hyperarousal.
To put them plain, here are the definitions of each:
Hyperarousal:
Having a difficult time falling or staying asleep.
Feeling more irritable or having outbursts of anger.
Having difficulty concentrating.
Feeling constantly "on guard" or like danger is lurking around every corner.
Being "jumpy" or easily startled.


Hypervigilance is one of the hyperarousal symptoms of PTSD and refers to the experience of being constantly tense and "on guard." A person experiencing this symptom of PTSD will be motivated to maintain an increased awareness of their surrounding environment, sometimes even frequently scanning the environment to identify potential sources of threat. Hypervigilance is also often accompanied by changes in behavior, such as always choosing to sit in a far corner of a room so as to have awareness of all exits. At extreme levels, hypervigilance may appear similar to paranoia.

There is a part of our brain called the amygdala. It's considered the fear center of our brain. It's the part that tells you when danger is present and how to react and also decides on what memories to store and the proper place to store them.
The amygdala of a normal person will light up when someone jumps out from behind a door and yells "ahhhh" to scare you. You immediately know that there is no real danger and that it was just your friend trying to make you jump. Your heart may beat fast for a few minutes and your body might have a strange sense of needing to run, but it all goes away fairly quickly. No harm done.

If you jump out from behind the door at me (or startle me in any way), it has a much greater effect. I can immediately recognize that it was only a friend and there really isn't any immediate danger, but my body doesn't follow suite. That intense need to "run" stays with me for a good hour or so and I become highly agitated because I feel like I'm in danger and need to fight for my life. I know I don't need to, but I'm incapable of relaying that information to my brain. It takes a lot of energy to calm myself back down. The world gets loud and my body gets so extremely tired from wanting to take flight but not being able to.
And then for the icing on the cake, it's in those moments that my brain sees the opportunity to attack. In those moments I'm "looking the other way" so to say, and a trigger or flashback can sneak in and take over. The things I work so hard to fight off during the day are sneaky little bastards that will take the first opportunity to strike when I'm at my weakest.

Because of all of this, the most important thing to my day is to feel safe.
I need a locked door. 
I need a space in which I don't feel as though someone can sneak up on me. (Which is why you will often see me sitting (alone) at a table in the corner of the room, a couch with a wall behind it, always being able to see all areas of possible approach, and never with my back to a door.)
I want to be at home instead of on the road where I feel like I could die in a car accident at any given moment. 
I will do whatever I have to do in order to be in control of a situation. (ie. I hate being passenger on car rides. You might kill me, I have no control over how you drive.)
I want to feel like no one can get to me while I sleep. (And yes, I'm lucky enough to have one of the only bedrooms in the house without a lock on the door. Sometimes I sleep in the bathroom or the closet after a bad day until I feel safe enough again.)
Don't take offense to my need for safety. It's not that I don't trust you, it's that I know I'm  not exempt from the bad things that happen in this world. I'm never going to mutter the words "It won't happen to me" because I actually think the exact opposite.

For the sake of anyone involved in any of my traumas over the years, I won't ever talk about them as specific events with specific details. I'll just refer to them as a whole, as a "series of unfortunate events" that brought me where I am today. I've seen a lot of horrible things, I've lived through horrible things that people shouldn't have to even remember, much less constantly relive and I've lost a lot of people who were really important to me to death.

My lovely little almond shaped amygdala is (obviously) far more overactive than the normal amygdala. Overreacting to potential danger and also storing way too many memories, most of them in the wrong areas of my brain. It's the reason that I can not only tell you the date of a bad memory, but also what day of the week it was that year, what the weather felt like on my skin, how the air smelled, what I was wearing, what songs played on the radio and so on.
My brain is, at any given time, remembering details beyond what is necessary. No one wants to remember the worst days of their life with such clarity and detail. And I don't just see it, I feel it. When it resurfaces, it's not just a picture in my head, it's happening all over again. 


Will it make sense if I now tell you that at any given time during the day, when I'm working my ass off to stay in check, that I can easily become agitated and irritable? I'm really sorry in advance when you get to see me during those times. Know this: it has nothing to do with you. If it does, I would tell you. Why? Because as far as I know, people can't read other people's minds. If I haven't told you something you've done to upset/anger me, then it has nothing to do with you. Just let me have my fit of anger and give me a minute to bounce back. Please don't purposely aggravate me further. I know that seems pretty obvious, but human beings are so naturally defensive that it's not. If you start to approach me and I step back, give me my space. There are times when all my PTSD symptoms are colliding that I don't want to be touched. The simple gesture of a touch/hug/shoulder rub can set off things that I am trying to calm down. Please give me my space. (I refer to this as my "bubble" as my way of getting away with having to explain my chaos to people).

I found the following list of rules on a PTSD support site:

The unwritten rules for PTSD:
Believe me;
Be patient, I do not want to be a burden;
Accept that my pain and my disorder is as real as any other physical disability or injury, even though you can’t see it;
Understand that I would never hold on to this if I had a choice;
I would like to cast these feelings into the far reaches of the universe and banish the pain and bad memories from my mind forever.;
If I don’t mind being touched then hugs are great;
If I say I just need a moment, or I lash out for no apparent reason, just wait for me to come back;
I want to be whole and happy and, other than my dark times, I will be there for you.

"Geez, you come with too many rules..."
I know, I know. I'm not asking you to know them. I'm just giving you the opportunity to learn if you want to. And if you don't want to, that's fine with me.