Journal, specifically,of a TBI (traumatic brain injury) sufferer.The cause and aftermath.
This is impossibly hard to talk about and I'm going to do it anyway. I was in a car accident. I was NOT diagnosed as a TBI sufferer and as a result suffered years of pain and complications. This is where I'll talk about it when I can bring myself to do so.
|Talking about psychosis is never going to be especially easy, for me or anyone else. No matter what words I find unless a person has experienced it they will probably be just words. Unless someone has had a truly awful experience that could mirror the feelings. I wouldn't wish that on anyone. I'm not going to go too far into that today. It's going to be a rough write and I'd rather do it on a rainy night with doctored coffee rather than a sunny day where everything is going well.
For me it was very much like a war zone. Everything felt like a threat and it was utterly terrifying most of the time. Notice I said everything, not everyone. There is a mistaken impression, fed mostly by media accounts, that everyone who suffers psychosis will be dangerous or violent. That is entirely untrue. Of course that what we see on the news because without violent action nobody is really going to run an honest story about the state of mental health care.
Many psychosis victims are terrified. I've even seen some completely paralyzed by the fear to a degree where they couldn't speak. I've seen them lost, confused, and alone. What I didn't run into once was any violent action at all. Even when I was surviving the worst of it I never had a single violent thought. I'll talk about my fellows another time because they deserve more attention than a paragraph.
I have to clarify that I went through two bouts of psychosis which substantial time in between so this entry is more of a general entry laying some of the groundwork for future entries. I will clarify the timeline soon and start creating anchors so I can more clearly reference events. Keeping at this at all can be difficult most days but I'll get there eventually.
Though the state refused to acknowledge the fact I was disabled by PTSD for their own financial reasons it is a truth. For a very long time I was incapable of participating with anyone or anything in any way that could be called normal. I had been hobbled by my experience and the treatment I'd received and had no way to express anything. For me it was like being trapped alone in my head with my nightmares. For an artist who'd built her whole life around expression it was a special kind of hell.
Sleeping was often nearly impossible because I'd developed an incredible hyper sensitivity to sound. Any sound large or small would snap me awake with a full adrenaline rush. Whether it was someone walking by my door or a car passing by. The only way I could get any decent chunk of sleep was with earplugs and even then they didn't always work. I was exhausted all the time.
Being around many people was an absolute impossibility for months on end. Even being around my family could be unbearably trying. I had all sorts of untreated problems and received no therapy so the fact that I could barely find the words to talk at all made conversation hellish. I couldn't draw or paint in the beginning either though I'd been doing so since I was 9 years old and seriously since I was 12. I had no resources and as I mentioned in an earlier entry all the forums I found online were geared towards the family of sufferers.
There were only a few friends I could talk to about it in a limited way but there was a gulf between us that they cannot cross. I'm personally of the opinion that talking about pain and suffering may help many but for some it's just ripping open wounds and reliving the trauma they're trying to come to terms with. How a person heals depends on who they are. Like many I resorted to escapism. Made much easier in this computer age we live in. Playing mindless games, reading books, anything to avoid dealing with anything.
What put the cap on how I deal with all of it was people involved making me feel powerless after being victimized. I've read some of the bullshit and lies in my files. I've yet to be able to read through them all. Of course I had to threaten to go spend a hundred dollars getting my own copies of it all to get my mother the hand them over. Every aspect of my life was taken over by other people and they didn't want to give it back. All of my rights and choices were taken away 'for my own good'. I don't know if they knew that's what they were doing but it's too late to fix any of that.
Because I'm left dependent on others and without any true sense of real independence I am in an almost constant state of rage. Tell me any of that medical personnel did me and favors and you'll see me go from sweetheart to monster in about 0.009 seconds. I will actually lay down and die before I fully trust anyone in the medical community. There are also people in my personal life I'll never be able to fully trust again.
I may run on anger but I don't let it eat at me. I just let it drive me forward. I focus my energies on being productive. There are days I'm not entirely sure I care about my art anymore. I paint because it's what I do, what I've always done. I lost everything that mattered to me but even if I do stop caring about art they can't take that too. One of the possible side effects of the drugs they feed me is an increased chance or pharma induced Parkinsons. If I do lose my hands I will go to a right to die state.
With what choices I have I am entirely inflexible. I used to really want to be reasonable and get approval from the people in my life. Not anymore. I'm mostly reasonable but I will do, think, and say what I want. None of it is negotiable. I cannot be bullied, bribed, or blackmailed. Even emotional blackmail gets people nowhere. When someone tries to play on my feelings this switch flips and those feelings just shut down and who's left is a pretty cold and unforgiving person.
I have also come to practice a scorched earth policy. I used to be an very trusting, loving, gentle kind of person. I trust many people still. I've been blessed with some incredible people in my life. However, if I feel my trust is violated in a serious way it's literally the end of the story. I cut off all contact and remove every possible influence of them from my life. All those friends that let me down when I was going through the worst part of my life, thus far, laid the ground work for this reaction.
I realized a short while ago this sort of hardening probably happens to many to some degree or another. Maybe that's why they say only the good die young. The older we get there's a chance the meaner we'll get. I believe I'm still a kind and helpful person. I try to be a good person not because I believe in anything but because I know it is the right thing. I still like people well enough but I will only engage with anyone on my own terms.
It was hard enough losing my home, job, friends, and sanity. What they did when they destroyed the person I was, when they damaged everything I liked about myself: That is something I find unforgivable. I actually had to mourn myself.
|I've never had especially good luck with roommates. So much so that I know I have a good chunk of responsibility for that. Looking at myself honestly is a very important part of this process for me.
I am very much a product of how I was raised. My dad, having been in the navy, ran a pretty tight ship at home. Our spaces were kept neat and we all bore responsibility for our words and actions. Excuses were never tolerated. There is a very thin line between excuses and reasons and we were shown where it was drawn sooner than later.
This wasn't a bad thing though. Our household did and does run on mutually shared responsibility. Everybody helped everyone else. Everybody had their own chores to help maintain the household. Looking back I am so endlessly grateful that we had all of that order to hold back the natural chaos of living life.
When I lived with my second lover he was really my first roommate. There couldn't have possibly been a worse circumstance. Alright, maybe there could have been but the whole relationship was really a horror show. Not the fun kind where you throw popcorn at the screen either.
My whole life I'd planned on having a husband and a family so moving in with him felt completely natural at the beginning. I left all my clutter behind and thought my life was really beginning for the first time. I can look back now and see every warning sign like some sort of neon flags.
At the time I was a full time college student and working almost full time as a professional hand writer. One of the strangest and best jobs I've ever had. Those hand written cards you get in the mail are often actually written by hand. It was a work-at-home position and the company was absolutely wonderful. If I could work for them today I would.
I don't know where the abuse started. If it were obvious no one would ever put up with it. When did I go from being his goddess to being trash?
I didn't notice the little things as first because I'd never lived with someone before. When he gave me crap about not vacuuming twice a week even though I was a full time student and working full time, I probably should have told him to stuff it and left right then. Hind sight is not a helpful gift. But he'd found his in for undermining me.
There were so many awful things. As far as I can remember when he started picking on me about gaining weight he would tell me horrible things other people had said about me. He could have been lying, not that it matters.
I was his only source of transportation at the time so I dropped him off and picked him up from work. Even after full time classes, full time work, and keeping the apartment in good shape I still got him where he needed to go. He told me once his coworkers had asked who the fat, greasy haired girl was who was picking him up. No. I am not putting words in his mouth. That is exactly what he said.
The shaming became so bad I became a situational bulimic. I would be driving to pick him up after cleaning and cooking (after school and work) and the stress would be so bad I pulled over and vomitted more than once. I had stopped eating in front of him by then. So many years later I cannot be around people when I'm cooking or eating without feeling like something is clawing at my insides.
One of the worst parts about that was I became as mean and nasty as he was sometimes. Once and again he pushed me so far past that point where even my fear of being alone didn't matter anymore and I would lay into him exactly like he layed into me. In public even. My whole life I took pride in being a gentle, kind, and optimistic kind of woman. Being with him make me the kind of person I was ashamed of being.
That's exactly how that kind of abuse works though.
If it hadn't been for my first lover maintaining our friendship and supporting me as a person I might have married #2. Instead of two years it could have become a lifetime of pain and suffering. I was in so much emotional pain at the time that without my first lover believing I was worth something I would have been entirely trapped and hopeless. Eventually my first lover and I gave it another go.
While I'm entirely grateful for having been saved I can only wonder if he was attracted to me then because I was in need of being saved. Some people are attracted to others because they need to be needed. Love based on that can't get far because if the person they love for that reason is actually fixed, they aren't needed anymore.
I don't know and it doesn't matter anymore.
When I lived with my first lover I was over the moon. I just flat fucking loved that man. He would drive me to my classes and I'd annoy him because I couldn't even begin to kiss him enough. It wasn't a kiss goodbye, it was ten. He used to tease me about it. Maybe I never explained to him that I was so unused to a lover being kind and doing something for me that I never wanted to stop kissing him. That poetry I write didn't write itself. It was written a kiss at a time.
I still love that man.
How long has it been? Just about 14 years since we first found one another. I keep waiting for the feelings to fade, or at least be less painful to remember, but it never seems to happen. He gave me a silver ring, the only jewelry I wear every day, it had 'forever' inscribed on it. It's fading away but I'll wear it until I die. Even 'forever' comes to an inevitable end.
Part of the reason the pain will never leave me is that he and I had just reconnected after my initial brain injury and psychosis. Just being able to say hello and talk about nonsense made me so happy that it felt like.. like breathing for the first time. Like that laughter you feel all the way through your body. Small talk it might have been but he made me feel alive in a way I hadn't felt in years. Then I relapsed into psychosis.
I begged my family to contact him and explain what was going on because I didn't want him to think I just disappeared, not after everything. They didn't. It wasn't long before he excused himself permanently from my life. I had become some unreliable problem that just kept showing up. No, he did not abandon me. I abandoned him thought not on purpose.
Psychosis shows up in so many different ways. I was beyond non-violent and it was almost entirely fearful paranoia. Part of that was I wouldn't keep in contact with loved ones because I had the delusional fear that my talking to them would bring them trouble and pain. Maybe my subconscious was showing through there.
I think losing him as part of my life was the very last straw. Before that relapse I was so joyful to be alive. To have conquered so much pain and suffering. After the psychosis there were years of wrestling with PTSD but I had put myself together. I had come back from one of the most painful experiences a person could go through.
Then it was round two and I lost the most important relationship in my life. All of the acceptance I had tried to feel for the people involved evaporated. Their mistakes eventually cost me something I couldn't live through losing.
I survived losing everything not once but twice. I lost my home, my job, my future, my hope. I lost the ability to laugh or even speak clearly. I couldn't make art which has been the whole of my life for nearly two decades. I couldn't talk to anybody about anything. How much of that was stroke related and how much PTSD I don't know.
I have come back from a living nightmare over and over again and I just don't have anything left. I work because work is the only thing that keeps the pain at bay. I don't have anything left to lose in life because it's all been taken already.
And this is one of those points where it's too much to keep on writing about. Time to take a break and start on a different entry.
|Lawrence was neat in a lot of ways. I was always grateful that their roads, named after states, were normally a neat part of a grid. At the time my sense of direction could be questionable but I could always find my way where I was going there. Being a college town there were many thoroughfares throughout the town where the traffic was almost always heavy.
I had quit my job at the gas station but I was happy. Happier than I had been in so many years that I could hardly remember when I'd felt I had more opportunity. I really thought I could do anything. I believed whole heartedly I could be any one or any thing that I wanted if I worked hard enough. I laughed a lot and still thought the wrinkles I'd wear would be made from smiling too much.
I remember this one moment, I believe I was picking up my roommate from the gas station where he still worked. The weather was entirely flawless. A perfect sunny autumn day that was still warm but with a breeze as sweet as they ever come. I was sitting on the hood of my car while I waited and I was drafting what I thought would be my first book. A how to guide about navigating the quarter life crisis. That moment is as bittersweet as any I've ever experienced.
Only a few days later I was driving onto campus to deliver my paperwork for my new position at the coffee bar in the library. I was driving down one of those main roads. I can't remember if I was singing along with the radio. Isn't that strange? I always listen to the radio when I drive and more often than not sing along. I just can't say.
It was a four lane road that was almost always packed with traffic. It was how most folks got to and from campus. I was behind a red truck and there was a little blue prius behind my jeep. I don't know what the truck driver was thinking. We were in the inside lane and cars were nearly bumper to bumper but he decided he had to make a left hand turn across two lanes of oncoming traffic so he slammed on his breaks.
There was this second where it all went through my head. I knew I was about to his this truck. I had pretty fast reflexes but it was inevitable. I also knew I wouldn't hit them too hard because I slammed the breaks immediately but I also knew that prius wasn't going to be able to react fast enough. I did several things at once. I hit those breaks, I grabbed my purse in the passenger seat so my phone wouldn't be too far away if the worst happened, and I didn't tense up because I'd heard it's safer to let the belt do it's job and try to move with the momentum while protecting yourself.
I don't know if my car has airbags but I know none deployed. I must have blacked out briefly because I remember the beginning of the collision but not the end. Later, when they looked at the damage to my jeep it appeared that the top off my head hit the windshield and that my seat slammed back all the way to the floor behind me. I'd taken out the back seat when I moved because it was the only way I'd be able to fit what I needed to move into the car.
I really don't know whether I was in shock or if I deal well with crisis situations but I had it together. I grabbed my phone and purse and checked on the welfare of all the other drivers, called the authorities and reported it, then contacted both my roommates and parents. I was like the super practical version of myself. Already I was wondering how our household was going to function with only one working car.
The truck barely had a dent on the back fender. My jeep could clearly be repaired but it wouldn't be driving anywhere any time soon. The prius was beyond done. There was half a prius left and it was shoved up under the back end of my jeep. The speed limit there was forty but I suspect the girl driving the prius hit me going about fifty miles an hour.
I remember her vividly. She was a sweet kid about nineteen or twenty and the poor girl was near hysterics. I honestly spent most of my time trying to comfort her. The group of kids in the truck were just fine and would later be able to drive themselves home.
This is the point in this narrative when people start raising eyebrows. Why didn't I let an ambulance take me to a hospital? Time to talk finances.
I had been working full time at a gas station. I'd been saving as much as I could the whole time but wealth isn't a word that would apply to my finances. Then there's the fact I have never had or used credit cards. An ambulance ride and an emergency room visit is enough to bankrupt a person in America. Thousands of dollars I'd probably never be able to pay off. I didn't feel too broken, certainly not enough to wrack up that kind of debt.
This is another nasty part of this story. There is a part of me that desperately wishes I'd broken something obvious. That may seem appalling to anyone who has had to suffer through bad injuries and all of the complications that come with them. I looked fine. I had some whiplash, a few bruises, and wasn't bleeding. Nobody was worried and that included me. I would make an appointment with a doctor later and not end up bankrupt in the process.
I didn't realize it then but that decision was going to change my life in the worst possible way.
|I had really taken to living in Lawrence, Kansas. In the beginning there were four of us in a tiny one bedroom apartment. Most people would think that would be awful but it was actually pretty fabulous. I'd moved to Kansas and moved in with one of my childhood best friends Kathy, her previous SO Ryan who was also a close childhood friend, and another guy Josh who I soon became friends with. It would be fair to say we were all of a relaxed and liberal oriented mindset. Something about being in such a tiny space lead to us all feeling closer to one another. I imagine it's how living in a commune would feel like.
It was a third story walk up with a galley kitchen, living room, tiny bathroom, a bedroom, and an itty bitty loft that was accessed via a ladder in the bedroom. At some point I claimed that tiny loft and slept on a couch up there. As we were on the top floor of the building the sun was shining on the roof right over my head and it got more than hot. The sweat didn't bother me so much, wasn't this the beginning of my life? What's a little sweat?! I happen to be afraid of heights. More like a phobia than a fear, even being up a couple steps on a step ladder makes my palms sweat. In the spirit of the whole adventure I climbed that ladder too many times to count.
My whole life I've been a sad kind of loner. I did almost everything alone. I joined very few clubs, I didn't play team sports, and both my sisters are four and eight years older than myself. For the first time in a long time it felt like I had a home and a family of my own.
Kathy worked in a coffee bar on campus. Josh and I worked full time on third shift at a gas station. Lawrence is a totally hopping college town and working overnights was rarely boring. Especially since our shift overlapped with the early morning hours. We'd have all the drinkers and smokers over night and all the half awake, or totally jazzed, clients in the morning. A morning rush in a college town at a gas station is a special kind of event. The kind that would give many people a nervous breakdown. Once a woman paid for a pack of cigarettes, in the middle of the chaos, with pennies. I learned after the fact that I could refuse change payment in that circumstance but she never came back while I was on shift. Probably because she acted like such a beast.
I loved my job actually. My whole life I've always preferred positions where I know exactly what my tasks are and those that are active positions. It's a little counter intuitive for an artist that spends most of her life sitting still but maybe that's exactly why I felt that way. Whether I worked in fast food, as a janitor, or at the gas station I loved the independence and activity of my positions. I was a bit of a cyclone once I adjusted. Everything that needed to be done got done every shift I worked. It didn't hurt at all that I've always had a touch of OCD. I cleaned that place like a mad woman. There were times when nothing else was going on and I'd actually scrub the walls.
There was a point I realized that they kept sale numbers on a chart in the back. It turned out my numbers were through the roof. I actually had customers that made a point of coming in on my shift because they knew everything would be clean, fresh, and I would be genuinely happy to see them. I loved my customers. The stoners in the middle of the night and the professors early in the morning. My customers brought a lot of happiness and value into my life.
I did date a customer, Rick. Such a sweet and brilliant dude. A red haired Scorpio man who was in school for neuroscience. He's still a very dear friend. When my roommates dropped the ball on securing our new residence, a duplex on the other side of town, and left us without a place to stay for a week Rick let us crash in his apartment. With all our stuff. That was about two weeks into dating. I repaid his kindness by accidentally breaking his coffee pot one morning which I immediately replaced but I still feel guilty.
My coworkers brightened my life too though I worked alone for the majority of third shift. We only overlapped about an hour or so in the mornings. I will admit, a few of my coworkers were of the 'Don't do it and someone else will deal with it' types. The vast majority of them were just amazing though. Kay was easily my favorite person. Every morning when she came in I'd yell 'I missed yo' face!" I had never floated in a lake drinking beer until she took me and Josh out. Isn't that supposed to be a midwestern rite of passage for adulthood? True, me and Josh got massively bad sunburns but it was totally worth it.
I worked to bring order to every aspect of our lives. I re-introduced my roomies to Aldis so we always had good fresh foods in the house without destroying our budget. I saved every spare penny I could. I was just this ball of optimism, good will, and support. Between the third story climb and my job I lost all of the extra weight and with the good food I was nearly a glowing image of young and healthy.
There are so many wonderful stories at that time. Once, perfectly timed when I was having a cigarette on my shift lightening struck a building no more than thirty feet away. It was incredible and terrifying. There was the day I helped Kay clean out her garage and I swear we had some of the most significant conversations in my life. There were the times my customers would bring me food, I don't know if I looked hungry or they were just that awesome but I was so flattered they thought of me at all. My luck that one of my customers was an entomologist and since I've always been fascinated with bugs I could ask him about this or that critter I found. There was one young woman that came in who had a skin pigment disorder, possibly vitiligo, on her arm. I often speak without thought and I told her it was incredibly gorgeous. It was, it looked like a beautiful tattoo to me. Thinking about her smile even now makes me tear up a little.
Not all that's good may last. After nearly a year I became frustrated and restless. This was my new beginning and I felt like I wasn't doing anything with it. Was I going to spend the 'best years of my life' as a gas station attendant? I enjoyed the job but between the inherent stresses and not being creative I finally hit a wall where I just had to do something different. I had saved enough to be solid and solvent for months and decided to quit. I was going to find something better and write that book, a self help, how to restart your life during your quarter life crisis book. I started writing and within a week and a half I secured a position at Kathy's coffee bar in a library on campus.
I had a new job, I had a home, I had a hundred open doors in front of me.
Doesn't everyone know that when everything is going right, something will go terribly wrong?
It did. And it happened in the form of a Prius.
|I've found that there is a contrast when it comes to readers in regard to brain injuries, psychosis, and other trauma. Either a person really does want to know about it or they don't. I used to try to make something significant out of what I went through. I wanted to talk about it for the people who either have gone through it or know someone who did, but I constantly ran into the kind of folks that didn't really want to talk about it.
The strange things about trauma, especially that which comes with PTSD, is that the sufferers cannot talk about it for a while. I don't mean like when I suffered a kind of lock jaw from seizures where I literal couldn't speak. I mean that the psychic pain is so significant that it takes years to speak honestly about the experience. If you ever can. Luckily(?) as an artist most of my work doesn't happen with words so I've built a collection of work that crystallized the experience for me.
One of the first things I did when I regained my sanity and ability to function was to look for survivor forums. I couldn't find any. There were message boards and groups all over the place for family members of brain injury sufferers. I was... I was a lot of things. I was endlessly angry, frustrated, and just drowning in sorrow. Maybe it's changed out there on the interwebs but I stopped looking for that community years ago. No one wanted to hear about it, no one wanted to talk about it.
I don't really want to talk about it. Reliving trauma over and over again is not a healing process in my opinion. It's just tearing open scars. At the same time I am so angry that no one wanted to listen to me that I'm driven to keep talking about it. I don't really know why. There isn't a solution or any justice for someone in my position. I could write a novel in painful detail and it won't fix anything that's wrong with what I went through or the life I will be living.
I'm going to write about it anyway.
I can't say it'll be in order or chronological. Writing about any of it always puts me in a dark mindset. I guess it's become a compulsion over the years. No one wanted to listen so I kept telling myself the same stories so I wouldn't forget if I ever found someone who wanted to listen. I kept drawing the worst of it over and over again. All so I would remember.
That's what this book is for.