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...
Friday, January 27, 2012
Monday, January 23, 2012
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
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
Friday, January 13, 2012
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.
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.
Thursday, January 12, 2012
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.
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.
Wednesday, January 11, 2012
over and over again.
The past few days I've beginning to take mental notes about the differences from the PTSD mind in comparison to the normal mind. I've only come up with one burning question: What would it be like to not have to have a daily battle with your own mind? Don't get me wrong, not every day is filled with gruesome horror, but there are still things in the day that can play the "Remember when..." and sometimes those slight twists of mind can open the wrong door and let chaos flood in.
And yes, like I said, every day is not filled with gruesome horror, but every single day is a challenge. I've found very rare few days in which I didn't have to battle my own mind. Every single morning (unless someone is there to immediately distract me) is a battle from the moment I open my eyes. I immediately grab for my phone to check up on Twitter and Facebook, play a game or two, read a blog. I need that immediate distraction or else my mind will start taking pieces of my dreams and finding ways to use them to open doors that I try my very hardest to keep closed.
After about 15 minutes of distraction, I decide I'm well enough (or have run out of time) to move on to start my day. In the bathroom while I shower, I have the radio on. Morning talk shows are brilliant distraction (as long as I concentrate on what they're saying and don't tune them out to listen to my own mind).
I'm usually fine by the time I leave for work, but still - the radio talk or an audio book on the car ride to work is crucial because all it takes is one trigger to slip through and I'm at risk for mush brain. One word spoken in the right context, a smell, a sound, a feeling, a song on the radio.... any one of those things can act as the key to unlock a door that lets out a flood of memory. And once that one memory gets through, it threatens that it has the master key to unlock every other door that I try to keep closed in my brain.
I always have to be ready for the battle. Every minute of every day. If I'm not paying attention when something slips through, it can be hours before I realize that I've mentally checked out. And even then, I only notice because I suddenly can't speak properly, or comprehend something simple, or the world grows increasingly louder to the point that I can hear every conversation going on around me within earshot.
"Get over it" right? All those who think that PTSD is just "in someone's head" and they're "choosing to relive bad memories" is dead wrong. Studies have shown that the PTSD brain PHYSICALLY looks different than the non-PTSD brain. Different areas are bigger than they're supposed to be. The logic "I'm safe" brain area is broken in a PTSD brain. You can check out this article for more information (aka proof that I'm not just blowing smoke about it).
It's things like these that make PTSD a disability. I shouldn't be able to function enough to get out of bed in the morning much less go to work, but I have three jobs and go to school part time. I've found that I can make it through my days if my days are filled with things that busy my brain.
My old boss at my current job once said to me (after we had an argument as to why I had my iPod on while I was working on computers - and the fact was that the song that my coworkers were playing had triggered me and I needed a different song to focus on to redirect my brain) "if you're disabled, you shouldn't even be allowed to work here".
It must be nice to be so ignorant to the world, right?
I immediately contacted HR and have them send over a massive amount of paperwork talking about PTSD in the workplace and how to accommodate an employee with PTSD. Turns out, the small things I was asking for to be accommodated in the first place were only a few of dozens of things that they were to offer me.
Yesterday I spent my hour after waking up mentally prepping myself back into reality but the moment I stepped out the door, all was lost. My skin grabbed at the air and my lungs took deep, unnecessary breaths. My brain held guard as best as it could, but I knew it'd be too late.
I needed to adjust to the weather and try to quickly make as many good positive memories as I could in order to overcome the bad one.
But good memories? They're hard to make in my world, the one in which I live inside my own head. I might smile at you or throw out a bit of wit and sarcasm, but they're just shields. They keep you from staring too long, from seeing deeper into the twisted horror that is the inside of me. I smile, I focus on you, I change the subject if anything gets too intense.
It's alright though, because you don't notice, and that's probably for the best.
And yes, like I said, every day is not filled with gruesome horror, but every single day is a challenge. I've found very rare few days in which I didn't have to battle my own mind. Every single morning (unless someone is there to immediately distract me) is a battle from the moment I open my eyes. I immediately grab for my phone to check up on Twitter and Facebook, play a game or two, read a blog. I need that immediate distraction or else my mind will start taking pieces of my dreams and finding ways to use them to open doors that I try my very hardest to keep closed.
After about 15 minutes of distraction, I decide I'm well enough (or have run out of time) to move on to start my day. In the bathroom while I shower, I have the radio on. Morning talk shows are brilliant distraction (as long as I concentrate on what they're saying and don't tune them out to listen to my own mind).
I'm usually fine by the time I leave for work, but still - the radio talk or an audio book on the car ride to work is crucial because all it takes is one trigger to slip through and I'm at risk for mush brain. One word spoken in the right context, a smell, a sound, a feeling, a song on the radio.... any one of those things can act as the key to unlock a door that lets out a flood of memory. And once that one memory gets through, it threatens that it has the master key to unlock every other door that I try to keep closed in my brain.
I always have to be ready for the battle. Every minute of every day. If I'm not paying attention when something slips through, it can be hours before I realize that I've mentally checked out. And even then, I only notice because I suddenly can't speak properly, or comprehend something simple, or the world grows increasingly louder to the point that I can hear every conversation going on around me within earshot.
"Get over it" right? All those who think that PTSD is just "in someone's head" and they're "choosing to relive bad memories" is dead wrong. Studies have shown that the PTSD brain PHYSICALLY looks different than the non-PTSD brain. Different areas are bigger than they're supposed to be. The logic "I'm safe" brain area is broken in a PTSD brain. You can check out this article for more information (aka proof that I'm not just blowing smoke about it).
It's things like these that make PTSD a disability. I shouldn't be able to function enough to get out of bed in the morning much less go to work, but I have three jobs and go to school part time. I've found that I can make it through my days if my days are filled with things that busy my brain.
My old boss at my current job once said to me (after we had an argument as to why I had my iPod on while I was working on computers - and the fact was that the song that my coworkers were playing had triggered me and I needed a different song to focus on to redirect my brain) "if you're disabled, you shouldn't even be allowed to work here".
It must be nice to be so ignorant to the world, right?
I immediately contacted HR and have them send over a massive amount of paperwork talking about PTSD in the workplace and how to accommodate an employee with PTSD. Turns out, the small things I was asking for to be accommodated in the first place were only a few of dozens of things that they were to offer me.
Yesterday I spent my hour after waking up mentally prepping myself back into reality but the moment I stepped out the door, all was lost. My skin grabbed at the air and my lungs took deep, unnecessary breaths. My brain held guard as best as it could, but I knew it'd be too late.
I needed to adjust to the weather and try to quickly make as many good positive memories as I could in order to overcome the bad one.
But good memories? They're hard to make in my world, the one in which I live inside my own head. I might smile at you or throw out a bit of wit and sarcasm, but they're just shields. They keep you from staring too long, from seeing deeper into the twisted horror that is the inside of me. I smile, I focus on you, I change the subject if anything gets too intense.
It's alright though, because you don't notice, and that's probably for the best.
Saturday, December 10, 2011
til the end.
For right now, its just my brain & me til the bittersweet end. You may know me, we may be friends, but I can guarantee that I haven't let you get close enough to really know me. We've been friends, but until now you've had no idea how I really work. By reading this, you've only really had a glimpse. I may have tried to explain myself to you, I may have tried to lay it out as plainly as I can but at the end of the day you only look at me as though I'm wearing this foreign disability on the outside instead of the inside. You stare at me as though I've become disfigured, unsure of how to act or what exactly it is you should do even though I've explained it as plainly as I can a dozen times. I can tell you what it is I'm thinking but you can't see it, can't feel it. In the end, its only me who has to constantly relive every memory, every fear, every uncertainty.
You all move through your lives with peace and grace and I'm stuck walking backwards through time over and over again. Every so often I've had that one person who grabs ahold of my hand and refuses to let me move from one spot. They've tried to give me a glimpse into true happiness, into life. So far, every time, I've watched the life fade from those few people and my brain just picks up shattered hope and tucks it away safely as a memory that undoubtdly will jump back into my thoughts in the weeks, months, years that follow the tragic loss.
Although the path to acceptance isn't the easiest path to wind though, I think I'm breaking ground. I'm no longer afraid of it, no longer trying to figure it out, no longer running from it - pretending its not my own. I live my days as they come. I try really hard to dominate my brain & thoughts and when I can't, then I use my resources to nutralize myself and wait to see what tomorrow might be like.
There's certain days when I stand alone, watching the world blur around me. Days when I could use someone to talk to and frantically search the hollows of my brain for someone anyone who may understand the impact of the words that would emit from my mouth. At the end of my search, I give in to the fact that the only person coming out strong through my frantic search of contacts stored in my head, is me. Ever since the fateful day when I was 19 and my best friend dared utter the words "Why don't you just get over it? Everyone else does." every bright light went dim inside my head. It was the day that I realized that no matter how hard I tried to explain and re-explain and draw maps and diagrams, no one else would ever understand the madness in my head. The daily, sometimes hourly devastation that consumes every inch of my body, mind and soul.
Am I saying it's virtually impossible for me to find a being who might remember enough of what I've told them and actually grasp what my world is like? No, I'm not. I'm sure there is someone out there. I'm not entirely sure, after all these years in "confinement", that I'd even know how to fully let someone in. I don't deserve it, and they don't deserved to be dragged down by the ever growing whirlwind of chaos and tragedy that is my brain.
I'm ok with that, maybe I was sent here for a greater purpose than to live a mundane life.
You all move through your lives with peace and grace and I'm stuck walking backwards through time over and over again. Every so often I've had that one person who grabs ahold of my hand and refuses to let me move from one spot. They've tried to give me a glimpse into true happiness, into life. So far, every time, I've watched the life fade from those few people and my brain just picks up shattered hope and tucks it away safely as a memory that undoubtdly will jump back into my thoughts in the weeks, months, years that follow the tragic loss.
Although the path to acceptance isn't the easiest path to wind though, I think I'm breaking ground. I'm no longer afraid of it, no longer trying to figure it out, no longer running from it - pretending its not my own. I live my days as they come. I try really hard to dominate my brain & thoughts and when I can't, then I use my resources to nutralize myself and wait to see what tomorrow might be like.
There's certain days when I stand alone, watching the world blur around me. Days when I could use someone to talk to and frantically search the hollows of my brain for someone anyone who may understand the impact of the words that would emit from my mouth. At the end of my search, I give in to the fact that the only person coming out strong through my frantic search of contacts stored in my head, is me. Ever since the fateful day when I was 19 and my best friend dared utter the words "Why don't you just get over it? Everyone else does." every bright light went dim inside my head. It was the day that I realized that no matter how hard I tried to explain and re-explain and draw maps and diagrams, no one else would ever understand the madness in my head. The daily, sometimes hourly devastation that consumes every inch of my body, mind and soul.
Am I saying it's virtually impossible for me to find a being who might remember enough of what I've told them and actually grasp what my world is like? No, I'm not. I'm sure there is someone out there. I'm not entirely sure, after all these years in "confinement", that I'd even know how to fully let someone in. I don't deserve it, and they don't deserved to be dragged down by the ever growing whirlwind of chaos and tragedy that is my brain.
I'm ok with that, maybe I was sent here for a greater purpose than to live a mundane life.
Monday, October 10, 2011
one bad day.
A ninja turtle could count on one hand the number of things that could pull me out of a bad day. For those of you who didn’t grow up watching our shelled friends fight crime and keep the streets of New York safe, that would be exactly three things. Three things I’ve found so far. And really, who knows if there will eventually be more or if there will come a time when one of those three things will no longer work.
The first is to overwhelm one of my senses. Currently that would mean one of two things, either blast my ears with music so loud that I can’t help but be distracted by the rhythm and thump of the music or to watch something dance across the television set. Some day I will probably end up deaf from the volume of the music I am able to tolerate when I’m nearly lost to my PTSD. But for now, it can at least keep me partially grounded. And by partially, I mean it won’t bring me back to reality but it keeps me from slipping into a non-responsive blank stare for the rest of my day. The chances that I am able to use this as a tool on a day that I really need it is slim to none. The only thing that can keep me treading water with music would be a pair of headphones that not only fully surround my ears and shut out the entire world or to be standing in front of giant speakers that are blasting enough bass to make the ground move. I could turn the music up in my car loud enough to make it seem distorted and risk possibly blowing out my speakers, but I’m too afraid of disturbing the outside world with such nonsense. They do, after all, always come before I do in my own mind.
On days like this I want to crawl into a hole, take a sleeping pill and succumb to the battle that I undoubtedly cannot win. Unfortunately everyday life requires me to be awake. And even in the hours I can choose sleep, it won't come easy. A day of battle means that the sleeping hours will be even worse. I want to pretend I can make it all go away but instead I find myself forcing myself to stay awake far past any reasonable bed time. This occurs for two reasons: 1. I can finally take time to find as many things as possible to distract myself with the use of the internet and an endless stream of movies. 2. The harder I crash, the more exhausted I am, the better the chance at falling into a sleep deep enough to ward off some demons. Even if I didn't feel like going through those two steps, I really have no choice because my drugs will not work their wonders on my super overactive brain. I would take an Ambien and then continue to stare off into space instead of slowly falling victim to the sedative. I need to be somewhat calm in order for them to really work. If I go to bed emotionally upset on the Ambien, I will end up starting my venture into slumber by sobbing violently into my pillow until I can no longer breathe and need to somehow bring myself back to a calm level.
It's always us, my brain and me, best friends til the end because I have no other choice.
Don't get me wrong, I do actually have real friends, ones that live outside of my brain. I spend every moment that I can to make sure that I'm helping them out in some way. Always staying busy, always useful and it's just as much as for your sake as it is mine. Helping distracts me and makes me feel better. And making you feel better by having my help makes me feel like I have a purpose. I love you all, with all my heart. You've become my tether to the world. But there are some days that I sit back and think "they really don't need me at all. I make them need me".
The first is to overwhelm one of my senses. Currently that would mean one of two things, either blast my ears with music so loud that I can’t help but be distracted by the rhythm and thump of the music or to watch something dance across the television set. Some day I will probably end up deaf from the volume of the music I am able to tolerate when I’m nearly lost to my PTSD. But for now, it can at least keep me partially grounded. And by partially, I mean it won’t bring me back to reality but it keeps me from slipping into a non-responsive blank stare for the rest of my day. The chances that I am able to use this as a tool on a day that I really need it is slim to none. The only thing that can keep me treading water with music would be a pair of headphones that not only fully surround my ears and shut out the entire world or to be standing in front of giant speakers that are blasting enough bass to make the ground move. I could turn the music up in my car loud enough to make it seem distorted and risk possibly blowing out my speakers, but I’m too afraid of disturbing the outside world with such nonsense. They do, after all, always come before I do in my own mind.
On days like this I want to crawl into a hole, take a sleeping pill and succumb to the battle that I undoubtedly cannot win. Unfortunately everyday life requires me to be awake. And even in the hours I can choose sleep, it won't come easy. A day of battle means that the sleeping hours will be even worse. I want to pretend I can make it all go away but instead I find myself forcing myself to stay awake far past any reasonable bed time. This occurs for two reasons: 1. I can finally take time to find as many things as possible to distract myself with the use of the internet and an endless stream of movies. 2. The harder I crash, the more exhausted I am, the better the chance at falling into a sleep deep enough to ward off some demons. Even if I didn't feel like going through those two steps, I really have no choice because my drugs will not work their wonders on my super overactive brain. I would take an Ambien and then continue to stare off into space instead of slowly falling victim to the sedative. I need to be somewhat calm in order for them to really work. If I go to bed emotionally upset on the Ambien, I will end up starting my venture into slumber by sobbing violently into my pillow until I can no longer breathe and need to somehow bring myself back to a calm level.
It's always us, my brain and me, best friends til the end because I have no other choice.
Don't get me wrong, I do actually have real friends, ones that live outside of my brain. I spend every moment that I can to make sure that I'm helping them out in some way. Always staying busy, always useful and it's just as much as for your sake as it is mine. Helping distracts me and makes me feel better. And making you feel better by having my help makes me feel like I have a purpose. I love you all, with all my heart. You've become my tether to the world. But there are some days that I sit back and think "they really don't need me at all. I make them need me".
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