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. 

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".

and the doctor said.

In my many attempts at trying to find some sort of peace during sleeping hours, I’ve seen a sleep specialist at a major medical college in the Milwaukee area. On my 6th visit they’ve only come to this conclusion: when I sleep, I look like I’m being chased and even the strongest of seizure medications taken before bed cannot calm this.
On this, my 6th visit, I get the pleasure of first talking with a foreign medical student studying under my primary sleep doctor. She speaks broken English and starts to drill me with questions without any type of warm greeting.

“You have PTSD?” she asks with surprise. I respond with the same surprise and say yes as I nod quickly.
“You have fought in war?” she asks in an almost mocking tone.
My face twists in horror and confusion and I tell her that I have not fought in a war.
“PTSD comes from war, no? How do you have PTSD if you have not fought in war?” she asks as she continues to stare at her computer screen and rapidly clicks her mouse. She has not looked over at me. She cannot see that my face has twisted into horror in reaction to her closed mindedness. She hasn’t the slightest clue that the two hours that I’ve been awake before my appointment I had to spend distracting myself back into a functionable reality. She has no idea how incredibly hard it was to walk through the halls of her hospital to get to her office without literally losing my mind. The hospital she works from is a major trigger to a painful memory that constantly threatens to swallow me whole.

Because she doesn’t know this, nor does she take note to the distress that she’s causing me, she leaves me in a thick fog by the time she walks out the door. She has unknowingly made my entire day become ten times more challenging than it normally would be. That’s all it really takes.

My sleep pattern goes something like this: a night filled with horrible dreams in which I wake 5 or 6 times, a second night with the same, a third filled with sad memories of those lost in which I wake up with swollen eyes from the tears I wasn’t even aware I cried, and by the fourth night, I’m forcing myself to stay awake and get little to no sleep so that by the fifth night I am in such a fit of utter exhaustion that maybe, maybe, I may sleep sound enough that I don’t remember my dreams.

on sleep.

It’s 6:30am and my alarm clock is threatening to jump off of my night stand. A metal bar violently thrashes between two bells in an ear piercing ring. It’s the only thing that is loud enough to jolt me from any type of sleep. This particular morning I can hear my friend upstairs as she encourages her 3 year old to wake up his daddy. My eyes aren’t yet open but I’m awake and my brain thinks it’s 1997 and that I’m listening to my mother talk to my 3 year old sister.

I open my eyes and try to focus on the room in a hast of confusion. I know exactly what my room looks like in 1997 and where everything is supposed to be but what I’m seeing doesn’t match. I jolt upwards in a panic and survey my surroundings repeatedly until my current life, 14 years later, starts to slowly enter my brain. I’m not at my childhood home. I am… living with Michelle. She is talking to Jaydon. I slump back into my bed and continue to try and sort out what my current life consists of from all the other memories and thoughts that are running through my head.

Hours later while I’m at work, trying to focus on the duties of my job, my body has still not physically caught up to my thoughts. I can consciously say to myself what year it really is and that the events of my dreams never happened but my body thinks otherwise. It whispers one word that keeps me feeling like I’m waiting for the starters gun in a race: "run!".

My dreams are different from yours. I don’t often dream of fictional situations that make me giggle when I wake up. Instead I dream of people who have passed away and situations that either have occurred or I fear will occur. My dreams are actually real life nightmares that tear me from sleep only to taunt me by letting fear engulf my entire being.
People with my kind of PTSD spend there entire day keeping their brains in check. Every sight, smell, sound, feeling is a potential trigger that can send you into a fit of rage or leave you huddled in the corner shaking uncontrollably. Every waking moment, I’m fighting my largest battle but the very minute that my sleeping pill takes over my consciousness, I’m literally setting down my weapons and any mean of defense and surrendering to the demons that are continuously chasing me.

When I sleep, they win. I don’t have a choice. And in the morning, when I wake, I’m left to clean up the mess they’ve made. I have to gather my mental defense, my "wounded soldiers", and beg them to get back up and continue their battle. Most mornings I eventually succeed at this, although it may take a few hours to do so. Some mornings they are simply too tired to fight back. They may let demons slip past their front line and it takes everything I have to beg them to turn around and chase back after those demons.

And on very rare occasions (and by very rare, I mean maybe once a month) I just have to accept the fact they they’re just too tired and that any attack on my brain I may have that day will just have to be taken without a fight. I simply put up the white flag and vacate my mind.

On those days, I’m standing right in front of you, but nothing’s there. I’m just a shell of a human being because my entire body knows to simply shut down and run on auto pilot to get through the day. At the end of days like those and on similar days in which I have a break of triggers that slip through, I collapse on a couch in a fit of exhaustion. I can’t think, I can’t move.

Tiredness, is a strange feeling for me. Its not often I have the pleasure to be too tired to think or too tired to have a wandering mind, even too tired to not let the fear keep my eyelids peeled wide open. There are only a few instances that’ll happen, the first being the days that I’ve had to fight extra hard (or give up in trying altogether), the “fifth night” in which I’m severely sleep deprived, or in which I feel 100% safe and comforted (usually by the presence of someone else).

I could write 50 pages on sleep alone, but at the end of those 50 pages the truth is, the only person who will fully understand the devestation devastation of “I didn’t sleep last night” is another person with PTSD. It goes so much deeper and has that much more of an effect on a PTSDer than the “normal” human being. I can tell you that I awoke at 3am with such horror that I forced myself to stay awake, too afraid to fall back into the hellish trap that sleep gave me. Imagine if your worst nightmares were the truth. Imagine if your worst memories were mixed in with those nightmares, constantly reminding you of how unsafe and unfair the world can be.

straight to the point.

I’m different from you. I have been my entire life. It’s no longer something I try to fight nor is it something I try to change. 

The sky is blue, the grass is green, I have PTSD.

PTSD, Post Traumatic Stress Disorder, comes in all types of sizes and shapes. Mine is chronic. For the rest of my life, this is as easy as it gets, and I’m ok with that. I have no other choice. The sun comes out during the day, the moon comes out at night, my brain works differently from yours.These are just the facts. It’s as simple as it gets.

I know what it means to have PTSD, to be me. I know what sets me apart and for the most part, I mostly understand what it’s like to be you, a “normal” person, but do you know what it’s like to be me?

In a mix of maddness over the years, I’ve slowly begun to realize that I’m not like the rest of the world. So I did what any normal human being that wants to fit in with this thing called the “human race” would do, I started keeping it all to myself. Over the years I learned my differences by either listening to other people talk, maybe asking some questions when I’d feel brave enough, and unfortunatley by just saying that wrong thing that makes people look at you with a puzzled look.

I’ve come to understand that “they” won’t understand when their only response to a problem I may have is an oblivious look on their face while they mutter “Just get over it.”

Oh, get over it. I wasn’t aware such things were so simple or perhaps I would’ve tried that a long time ago.

i was sent here for the rescue.

I got the chance to be in this video. I can be seen at 0:24/0:25/0:26

It's 12:30am and I'm exhausted but something tells me I don't want to go to sleep.
My brain is being a bundle of PTSD mess and I know that only means equally as crappy sleep (which only equates to not being able to fight back).

In a blog I found online while searching for a way to describe this lost battle (and it is the description to the very core):
{From the moment I wake I know I have no choice but to go to sleep again. It feels like I’m tossed into a boxing ring where I dodge punches from flashbacks, ugly memories, shame, fear and un-resolved issues. It’s as if I’m constantly getting punched in the head. For my own sense of pride I duck and even punch back but I know in my heart I’ll eventually be forced to throw in the towel, lay down my pride and declare my past the winner. I’ve got to go to sleep, no if, ands or buts about it. I have no choice. This angers me too. After all this fighting, stuffing, avoiding or even addressing things head on the bottom line is I have no choice but to sleep. It feels like betrayal because I know as soon as I lay down the ultimate fight begins. I’m going to dream in vivid color and strict detail. Nightmares are going to punch and punch and punch until they don’t feel like doing it anymore.} The blog from the bracketed quotes can be found here

I'm so goddamn tired.
and even more lost than that.
My brain becomes a weaving mess of thoughts in an area that's already at capacity.

Some moments in my day leave me with such peace and clarity that I can barely even believe that it's "real".
And times like this? The jumbled mess of emotions I feel... it's more often then not.

& I absolutely hate it with every ounce of my being. 

Still I can't help but think that the world has far more problems than mine. Far more serious. I have nothing to be somber over.
suck it up erica.

over 2 million people have seen my face. (I'm at 0:24/:25/:26)
& I want the rescue, so very very badly.
But I think I was literally only sent here for the rescue
not to be rescued.

no other way.

Today is Sarah's 26th birthday.
She isn't here to see it. 

Sarah died on September 9th 2010. She suffered a massive heart attack brought on by a seizure (which was caused by cancer). She had just been cleared (NED - no evidence of disease) the month before. 

In the front cover of a journal she made for me (in December 2006) she writes:

My dear Elikai - 

A gift I have been given over the past months is an ability to write, both to myself and to you. Your presence, though many miles away, has been a constant, never wavering comfort through both my darkest and lightest days. I love you, at your worst and at your best, never forget that. No matter what the next tide may bring, I will be here for you. 

I have a quote for you - something that is part of who I am and how I think of you.
"You remind me why I stay here. You remind me of all the good, the great, the wonderful - you remind me of the boats, of seas, of races to be won, of fun to be had, of adventures I've not yet dreamed of."
During those moments when I am not sure what I have to live for? I have so many things, so many people, to remember. So many reminders that it is not yet my time, that I owe it to myself and everyone who has cared for me and given so much of themselves in the last two years, to give this my very best shot. That realization helped me keep my head above water, so to speak, and keep it on a bit longer.
I want you to know that you have had an incredible impact on my life, Elikai. However long my stay here turns out to be, you will be in my thoughts and heart the whole way. I will never forget all you have done for me. I will always admire your strength, courage, and resolve through staggeringly difficult times.
To me, Elikai, you are a hero. I know I am not the only one who views you as so, and I hope you forever stand tall, proud of who you are, where you came from, and what you have accomplished.
All my love, 

Sarah xx

&
(previously written on November 21, 2010)
I knew it was coming. 
I had known Sarah had written me one last letter. 
Her final goodbye. 
But no one told me that it had been sent out. 
I wasn't waiting for it. 
It just came. 
It sat in Matt's hands, urging me to grab it. Begging me to want it. 

All I could do was stare at it. 

It was someone's very last words to me. 
And unlike all the times before. The years and years of letters she had sent - one last time the envelope was addressed to Miss E Kudek. 
The address though, wasn't her writing. It was Ali's. 

"Take it back," I murmmered under my breath.
Inside my head I was screaming "No, I don't want it! The address, it isn't her writing. She didn't sent it. I DON'T WANT IT."

Elikai,
I'm hopeful I'll never send this. But you get it... the chance to say thank you and goodbye must never be passed by.

It sat there. Next to my bed. Only mere inches from a box full of letters she had sent. One's that I had ripped open in the joy of receiving them before I ever even got back into the house. If I don't read it, she won't be gone. 

I mindlessly rub the fly symbol on my wrist. 
"When you can no longer run, nor walk, nor crawl - fly." she had told me as she gave me a ceramic dove.
Fly. 

Your life has been so tough on you. Your strength & faith, your determination that you will survive & get stronger - You amaze and awe me. Each and every time I contemplate the mountains that seem to face me? I think of you, your quiet bravery and know that anything is possible. Your open, giving heart taught me how to heal when I feared I would never be able to breathe again. 

Years of words sit in that box. Words that carried me when I was too weak. Hope. 
"Remember? We were going to go to the ocean together. Just you and me and the water. We were going to sit in the sand and all be one. Because we were one." 
If we hadn't done that yet - then she can't be gone. She wasn't allowed to kill a dream before it had become reality. 

You are, without any dramatics intended, the strongest woman I know. An inspiration to me during both my darkest and lightest hours.
Know this - I may be gone, but I still love you and want the very best for you. Look after yourself, my darling Elikai. 

And then, she had signed it as she always had.
I love you, be well & take care
Bumble

to judge a life you can not change.

[previously written February 25, 2008]

We watched Walk the Line at Michelle and Matt's house... and during that once more, Ryan popped into my head. He had begged me so many times to help him with his drug addiction, that I was the only one that could help him stay on the straight and narrow. I always refused... I never wanted to become the person who he hated because I kept him from his addiction... and I never wanted him to not be able to do it without me around. After watching Walk the Line, I felt regret for that... maybe all an addict needs is that one person to believe in them.
I felt like texting him to say I'm sorry. To ask him to coffee so I could tell him I was sorry myself. But I didn't.

On our way home we had to stop at the local hospital to visit a friend, a guy who had helped work on the race car. This man... was an alcoholic. We all knew it... and as hard as I tried to stay kind to him, I sometimes snapped, annoyed at the fact that I knew he was drunk. He sit by me and repeat himself because he couldn't remember what he had said. Other people had done that to me one too many times, and me being sober, I never felt like humoring him or laughing it off. It made me bitter, it made me snap at him.

He was admitted to the hospital 4 days ago into the ICU... his blood alcohol level was .58. Point five eight.
He was near death. Now in a regular room, we went to visit him... I wanted to show him support since I know this man has hardly any friends at all.
"I'll stay out in the hall" was riding on my lips as we proceeded to try and pull the room door instead of push it, but I kept my mouth closed, walked into the room and headed straight for the couch to stare at the TV.

Rodney kept asking me questions and I continued to answer with blunt short answers, kindly doing things as he asked but never saying more than I thought he needed to hear in order to understand something I was telling him.

I stared at this man... this man who had pretty much lost everything, including his dignity and self respect because of alcohol. This man had an addiction.
I hated him.
It was 100% wrong of me, but I absolutely hated him. I understand addiction, but I still couldn't stand the sight of him.

I had no pity. I had no feelings except those of anger and hatred. I was disgusted.

I shared this with Joey as we walked out to our car.
I knew he'd look at me exactly the way he did... the "how could you be so insensitive especially after all you've been through" look. And my answer was exactly that.
All I'd been through. 
I've been phsyically hurt because of alcohol, I've lived in the shadows because of it, been neglected because of it, had to live the lies of life because of it... it had been half the reason I was where I am today.

I had no pity on the people who caused other people pain because of the lies and deceit that comes with alcoholism. It's horrible of me, I'm well aware. I also fully understand that people don't turn to alcohol to purposely hurt other people... that there is some underlying reason, some life altering event that made them need to numb out the world.
But I can't help it. I still hate them. All of them. 

So there, is the honest truth.
-------------------------------------------------------

[previously written February 27, 2008]

(after everyone else had attempted to contact him and he didn't answer)

I don't know why... but I offered to try.
So I called... and look at that... Rodney answered.
He had checked himself into rehab and told me all about the last few days. I listened like I was his friend. I offered support as if he were important to me, I talked to him like I didn't hate him.
I didn't even mean to. But I think when he answered I treated him like an addict and not an alcoholic... and addiction is something I understood, something I could have empathy for. I could have easily chose alcohol or drugs instead of self injury... all in the same it numbed me from the world and was a temporary fix for the pain I was in. Addiction is addiction... I just can't go around saying I've been clean for xx amount of years.
Well, I guess I could.
Rodney closes the conversation with a desperate sounding "Will... will you keep calling me every once and a while? I need the support, I don't really have anybody." I answered "of course I will".
I went from hating to helping. And I was proud of myself for taking that step over to the other side.
After that I saw myself differently. Like I took off the body armor and was standing there vulnerable. I realized that I'm more broken than I lead everyone to be.
There's this line dividing the world. On one side stands the broken... on the other side the blind.
Standing on the line are the healing.
Open your damn eyes people of the world, this world isn't perfect. People have been through horrible things and suffer because of it.
I'll leave it at that.

-----------------------------------------------------
After that conversation I took Rodney in under my wing. He checked in with me 3 times a day and sometimes our conversation would last a good hour. I could tell when he was drinking, when he wasn't, when he was being truthful and when he was only telling me what he knew I needed to hear. 
I spent hours standing in his kitchen watching him sit on his rocker, waiting for him to be ready to take him back to detox or rehab. I spent hours explaining to him how addiction worked and how it was a disease. A disease that I understood. I watched him light cigarette after cigarette coming up with every excuse in the book as to why he couldn't go that moment. 
Somedays I failed. Somedays I spent hours outside his apartment building making sure he didn't get in the car to go and get alcohol. And then one day, he made it to 30 days sober. 
Sobriety, is the most beautiful thing I'll ever witness - without the alcohol he was the most well spoken person I had met. I watched him become sober and his hair was cut to the right length and clean, and his glasses weren't smeared and foggy, and alcohol wasn't seeping out of his pores, and his clothes were clean and straight. He saw that side of things where life is worth living again. 


But that disease, it takes over your life. 


For months we went back and forth between detox and inpatient and AA meetings and halfway houses and trying so very hard to piece his life back together. It's the most exhausting thing I've ever been part of. To watch someone struggle so very hard, to watch them want something that they can only barely graze with their fingertips. He wanted it so bad that even I could taste it. And one night, as we talked things over after a scare that had landed him in the hospital he said the words I will never forget "Everyone thinks I'm out to end my life by choosing to live this way. I don't want to be this way, I don't want to die. I don't want to die."
By February of 2009 I was mentally and physically exhausted from the battle he fought.
I wanted to fight it for him. He wanted sobriety so damn bad. 
I stood outside of work and listened to a voicemail he left me on my phone. "Hey Erica, it's me, Rodney. I was in the ICU, I'm out now... in a normal bed. I messed up, but I'm sorry, I can do this, I know I can. I can do this because you believe I can. Can you call me back? I don't have anyone to talk to."
I was upset that he relapsed yet again. I hit end on my phone and didn't return his call. 
In March of 2009 he had been sober for a few weeks since the ICU stunt. 
He had one bad day. He walked 3 miles in the freezing temperatures to the local grocery store where he bought one bottle of booze. 
He drank all of it and died that next morning on March 12, 2009. 
His death hit me hard. I'd sit staring at his Nikon SLR that was still in my possession - he wanted me to keep it safe from him, so he wouldn't sell it for booze and he knew my love for cameras, so I was the perfect person to babysit it. I wondered if there were any photos left on the last roll of film he had in it before handing it over to me.
I didn't want to go to his funeral, but I had to go to his funeral seeing as I was one of his only friends.
I didn't think I could handle seeing his body laying in a casket. I had seen too many in my small amount of time on Earth. 
And to my surprise, I suddenly didn't think I could ever handle doing this for a living it just hurt way too bad. But then I realized that not every battle could be won, and that not every battle lost would hit me this hard because the way I was intertwined with Rodney's life was much different than the way I would be involved in my client's lives. 
It hurt, but the one I save? Their life will be worth so much more than the pain I'll have to endure getting there.