YOLO

I’ve wanted a tattoo for a quite a few years. Every time I planned to get one, I ended up not following through because I couldn’t settle on what to get. I wanted a Phoenix, because if it’s significance in rising from the ashes. But it would have to be a reasonably sized tattoo, and I wasn’t sure I could handle something that intricate on my first go.

I thought about getting a butterfly. Once again, for its significance and relation to growth. But butterfly tattoos had gained popularity, and I didn’t want the meaning to get lost in the hype. But I always wanted something to symbolize my freedom.

Then when I got sick, I was told tattoos were a no go. Too much risk of infection, I assume. So I didn’t think about it for awhile, until the other day. I filled out a short get-to-know-you thing out of boredom. One of the questions asked about tattoos, and I wrote no. When my friend saw it, she said we should go and get my tattoo. Admittedly, we were both overly tired and I was not in the best frame of mind. But when I thought about it the next day, I really wanted to do it.

I’ve had to avoid so many things in my life. Can’t get vaccines anymore because my body isn’t strong enough to fight them. Can’t eat high-risk foods, like raw vegetables, because any contamination can make me sick. Can’t be around anyone who may be sick.

But what’s the point if I still get sick anyway? I can’t live in a bubble. I can’t avoid everything that will hurt me. So why deprive myself of something I wanted just because it might make me sick?

Just a day before, I had gone to a buffet — Golden Corral to be exact. They don’t have those where I’m from, so I was a little excited when I saw one here. Buffets are not good for me — not only because of the higher risk of contamination, but because most of the foods there aren’t good for my GI Isaura. But I said fuck it, I want to go. And we did. And I suffered for it, as I expected. But even through the discomfort and pain, there was a sense of joy in doing something I wanted.

So I took another risk. Today, I got my first tattoo. It wasn’t anything ornate or fancy. I didn’t want to take too much of a risk.

I couldn’t think of a more meaningful tattoo. The date I ran away, and birds of freedom. It’s a constant reminder for me, in those times when I do want to give up, to remember how far I’ve come from where I was.

Writing about PTSD

I haven’t had much energy to write as many posts as I want to. I want to be able to get out all the shit that’s been in my head. There’s a lot going on, and a lot that will be going on in the next few weeks, as I reach 1,000 days of freedom in April.

A few weeks ago, I was offered an opportunity to writer for the APTSDA, the American PTSD Association. While I still write about DID for HealthyPlace, writing about PTSD is different, and I figure it is an opportunity to reach a different group of people.

My first piece published yesterday. It can be found on aptsda.org, or directly through this link: The Flashbacks You Can’t See.

It’s not much. I write so much that sometimes I’m not really sure what to write about, and I get tied up in the thought that maybe my experiences aren’t the “right” ones. Yet the more I write, the more I read from others that they have experienced the same.

I will update with more soon. Hopefully.

Ruined

Research shows that people who have experienced sexual abuse in childhood are four times more likely to work in prostitution than people who have not.

It doesn’t surprise me at all. Because it’s happened to me.

I’ve done things I really shouldn’t have. I didn’t end up on street corners putting myself in danger, but I definitely put myself in situations in which I did things I didn’t need to. Yet it wasn’t just about the money.

People constantly judge, asking how someone could degrade themselves like that. But I was already degraded. I was already ruined. And it wasn’t my choice.

It’s inexplicable just how damaging it is when your first sexual experiences were with your own mother. I had sex before I even knew what sex was. I felt shame before I even knew what shame was.

My mother created a never-ending cycle, a lose-lose situation that I could never, ever win. I was programmed not to say no; saying no got you punished. Yet saying yes meant I was a whore. Any time my mother believed I was being remotely sexual (and I really wasn’t — what seven year-old is), I had to be cleansed of my sins. After a while, I started to wonder what was wrong with me, why the evil hadn’t left me. I’d been burned so many times, I learned not to feel.

It just got worse as I got older. There were constant accusations. I couldn’t stay after school to work on group projects because my mother believed I was having sex. She accused me of posting nude pictures online; I never did. She’d pull these crazy ideas from I don’t know where. Even when I was an adult, she’d accuse me of being in relationships with people at work. She accused me of having sex with my (female) boss; she was just my friend. She’d also accuse me of having sex with several coworkers. When I would stay late at work (to avoid going home), she claimed I was at work having sex. She continually reminded me how much of a sinner I was and what a whore I was.

None of what my mother claimed was ever true. And I knew that, on some level. But I became conditioned to believe that I was a whore. That something inside me made me this way. There was a defect in me that everyone could see but me. After all, normal, pure kids don’t do these things with their own mother. Maybe I made her do it. She always said she was trying to help me, but maybe I was just too damaged from that start.

I never had the chance to form my sexual identity. I grew to fear sex. Unless it involved my mother, it was somehow wrong. Yet in an intellectual way, I knew that if it involved my mother, it WAS wrong. There was no right way. It was all wrong. It was all bad.

Once I was a teenager and really understood sex and sexual identity, I realized that my body, my sense of self, was already ruined. While others my age talked about losing their virginity, I had already lost mine, more than ten years prior, to my own mother. It was never my body; she stole it from me. It was hers. All of it. All of me. It was hers.

The fear of telling someone no overruled my life for years, even after I managed to run away. While my body was no longer being damaged by her, I let it be damaged by others. I was already ruined; there wasn’t much more anyone could do to me to make me hate myself any more than I already did. All those years she called me a whore, it stuck with me. It was like a prophecy that needed to be fulfilled.

Before I left IOP over a month ago, I made a promise to someone very important to me that I wouldn’t engage in that type of shit anymore. I promised I wouldn’t put myself in any kind of situation that would cause that weakness in me. And I haven’t. It was easy to do, a lot easier than I thought it would be. One less thing to worry about.

Except I didn’t account for all the possibilities. I managed to avoid  not-so-healthy people who had been involved in my life before, but I forgot about the not-so-healthy people who I couldn’t avoid — the strangers, the acquaintances, the come-and-goers.

I was sitting on the bus the other day, on my way home from a doctor’s appointment. I was emotionally drained. There was man on the seat across from me; I’d seen him many times before, but never really engaged much aside from hello. This time, he started telling other passengers that I was his fiance. I told him to shut up, but he didn’t. He just kept saying it. When the bus emptied out a little, his comments got worse. He told me what I could do to him, and all the things he could do to me. I just frozen. As much as I should have told him to fuck off, I couldn’t say anything.

I could feel the nausea kicking in almost instantaneously. I showered as soon as I got home, trying to scrub away the feeling of being dirty. But as much as I washed, I didn’t feel any better. I could hear my mother’s voice in my head. This was my fault. I was a whore. He must have sensed it in me. That’s why he said those things and made those gestures. Somehow he just knew.

I was afraid. Afraid my mother would find out. Afraid I would be punished. I believed his actions were my fault, just like my mother taught me — look what you made me do. 

It was always something I did, something I was, something I said. It was never anyone else, and never her. But that was her falsity, not the reality.

One day I want to be able to decipher between the two. One day, I want to tell her, look what you did to me. Look how you ruined me.

POTS, Not Pans

Part of my hesitance in going to the doctor is because I don’t want any more diagnoses. I feel like I have enough. Hell, even disability forms have spaces for 10 diagnoses, and I had already exceeded that. I don’t want any more diagnoses. I don’t need any more problems.

As much improvement as I’ve made in seeking out medical help, as soon as the possibility of something more comes up, I push it so far back into purposeful forgetfulness in the hope that it will never come up again. I did it last month when I attended a COPD support group. The respiratory specialist pulled me aside after group, asked me a few questions about my history, and recommended I come back to be tested for Cystic Fibrosis. She seemed concerned. I told her I would come back; I never did.

It’s a lot easier to forget shit when it doesn’t affect you every day. I’ve had breathing issues most of my life. I’m used to it.

What I’m not used to is passing out onto the floor. That I can’t forget. The concussions. The bruises. The people who have to surround me when I get up because they all know I’m going to end up on the ground unless they catch me. The very thing that led to me losing my job.

I thought I had answers, at least in part. Clearly something was off with my heart rhythm. They said it was an arrhythmia. They just couldn’t tell me which one. That’s why I had the cardiac implant. It was going to tell me what was wrong with my heart.

So when I went to my cardiologist appointment on Tuesday, I was fully expecting a simple answer. Just tell me what arrhythmia it is. Just tell me how we can fix it. I need to work again. I need to be normal.

But that’s not how the appointment turned out. The doctor scanned through the information from my monitor. I had the PACs and PVCs as suspected. He could have prescribed a beta blocker to help regulate my rhythm, but because of my age, he thought the risks were greater than the benefits. But even with that, the irregularities weren’t enough to cause my consistent passing out.

The cardiologist sat there and started to tell me there was nothing left that he could do, that he ran all of the tests he could and none of them could fully explain my symptoms. He brought up seeing a neurologist to rule out seizures, but I knew these weren’t seizures. I knew that something was wrong. But I felt defeated. All I could say was okay.

But my friend is not like me. She was not about to back down and say okay and leave my doctor’s office without any real answers. And I think the doctor realized that. So he brought up more things, some fancy words, but still nothing concrete. He mentioned something about blood pressure, and I told him well that’s complicated in itself. He asked me to explain. I reminded him that’s what led me back to him in the first place, when the PHP program found an irregularity in my blood pressure — high in one arm, low in the other. Drastically low at times.

Something must have clicked in my doctor’s mind, because he told us to follow him to his office. He pulled up my records on his computer. And the more my friend described what was happening to me, the more firm he felt in his belief about the diagnosis.

I have POTS: Postural Orthostatic Tachycardia Syndrome. It explains why my heart rate can go from the 30s to the 130s in a matter of minutes just from moving. It explains why I pass out when I stand up, or after I’ve been sitting down for a long time. It explains why my head gets so foggy sometimes out of nowhere. It explains why my blood pressure changes so drastically. POTS explains that all.

I got an answer. A diagnosis. But it’s not an easy one. In reality, I would rather my issue just have been an arrhythmia. They are easy to fix. Simple. POTS isn’t so simple. POTS isn’t so easy to fix. And when you really start to look into it, it’s only a piece of a much larger puzzle. Because POTS is never just POTS. POTS is a part of a larger problem.

POTS is one form of Dysautonomia. A big word, but basically it’s the dysfunction of the autonomic nervous system, which controls all of the automatic processes in the body: heart rate, blood pressure, breathing, digestion, and temperature control. It’s also the system responsible for the fight-or-flight response. The system that’s been overworked since I’ve been born.

So much makes sense now, and not just the passing out. People with Dysautonomia can have problems with malnutrition. They can have trouble regulating their temperature. It explains why I always end up vitamin and protein deficient even when I’m eating right. It explains why I can’t feel temperatures like everyone else can, why I don’t realize when it’s too hot or too cold. It explains why I can’t always feel pain when something is hurt, and when I don’t realize I am sick when I’m really sick. The system that’s responsible for the basic necessities of life is broken.

There’s no direct link between Dysautonomia and trauma, but I can’t help but think that there’s a connection. The very system that plays a role in the body’s response to trauma is the same system affected by these conditions.

Maybe the autonomic nervous system is like a car. A car only lasts for a certain amount of mileage before it starts to break down; that’s how it’s designed. If you drive it a lot, it’s going to break down faster.

What if that’s how the ANS was designed? Maybe it’s supposed to last a good 80 years of regular use. But when it’s overused, when trauma happens and it’s constantly activated for years and years, it breaks down faster. Because the human body wasn’t designed to endure consistent trauma. It’s why trauma survivors rarely suffer from just the psychological effects of what happened to them. There’s physical damage, too.

It frustrates me in more ways than one. Another diagnosis, and one that I can’t ignore. And even though there are things I have to do now — take medication, increase my salt and fluids, wear compression socks to push the blood back to my heart — it’s not a cure. I’m still going to pass out. I’m still going to be affected. It’s another disabling condition.

I sat in my cardiologist’s office in wavering denial. My friend asked him about my ability to work, how no one wants to employ someone who’s going to pass out like I do. She asked him straight out if I could work, and he wouldn’t give a straight answer. He circled around to talking about keeping myself safe. He wouldn’t tell me what I really wanted to hear.

It’s another diagnosis I didn’t need.

Two Years of Freedom, Part 2: Learning to Live

“There’s a lot of things that she should have learned as a child and didn’t, but she’s learning them now.”

It’s so hard for people to understand, and I don’t necessarily blame them. They don’t understand why I have trouble communicating, why I am so scared to go out places, why I freak out when I have to use the phone. I’m an adult. I should be able to do these things. What they don’t understand is how much I missed learning and experiencing for the first 29 years of my life.

Even after I ran away, my experiences of life were skewed. I was in an environment that really wasn’t the best for me. I told myself it was okay because it was better than where I came from, but the truth is that being in that environment held me back. I was no longer a prisoner of my mother’s home, but for multiple reasons, I became a prisoner in my own room. The ways of life I was experiencing were not the ways I thought a normal life would be. But I didn’t know any better at the time. All I had to go by was the word of those close to me, and those were not the best people to learn life from.

I lost hope for a bit when my mother found me, shortly after my 500 days of freedom. I believed that was going to be it for me. Those next few months were the hardest. I questioned whether it was all worth it. No family, dwindling friendships, increasing debt — I was living on leftover scraps and cheap rice from the dollar store, functioning on little to no sleep because the place where I was living was no longer safe for me. But I had no other options. I was too ashamed to ask for help, too ashamed to ask for food, too ashamed to tell people just how bad my life had become. I learned to tolerate life, just like I learned to tolerate the life I had before I ran away.

What I didn’t learn, up until a few months ago, was how to live. All this time, the only thing I was learning was how to tolerate things I shouldn’t have had to tolerate. That was not life. That was not living.

But everything is different now. For the first time in my life, I am in a safe environment. I don’t have to lock and barricade any doors. I don’t have to worry about who is in my home. I no longer sleep with a knife under my pillow. I no longer go to bed with three layers of clothing on, because I no longer live with the fear that my mother is going to come and hurt me in my sleep. She doesn’t know where I am, and if there ever comes a time when she does find out (because I don’t believe for one second that she won’t try to find me again), there’s nothing she can do to hurt me. I am protected — by people, by three big dogs, and by my own (still growing) strength.

I have people who genuinely care about me. They are helping me learn what life really is, what normal is. And I still struggle with things. I don’t always eat like I should, or know what to say in social situations, or how to act when I’m out and about. But I am learning, with their help.

And even in the few months that I’ve been here, I have improved so much. I used to avoid the grocery store because it gave me anxiety. Now I look forward to going every Sunday. I used to have meltdowns whenever I’d end up in loud places. Now I go out to eat in noisy restaurants and manage the anxiety with the help of people who support me. I used to hide food in my room because people would take it from me. Now I don’t have to do that at all, because I know that food will always be available to me.

I’m learning how to make choices, although I admit that I still need to work on that. I try to navigate through healthy and unhealthy relationships. I try to make decisions regarding my medical issues. I even try to pick out foods I like, which is something I never got to experience before. And it’s not always easy. I still have times when I get too overwhelmed, when I need to ask for help. And now there are people there to help me do that.

I go outside so much. Sometimes it’s to play with the dogs. Sometimes to just sit outside to read, or to watch the fireflies, or to look at the flowers. Some nights, I still sit outside and look up the stars; it reminds me that I am free. It’s something I could never do before. And it still amazes me.

I never knew what life really was up until a few months ago. I never imagined things would be this way. From the outside, you would think my life would be in turmoil. I’ve been out of work. I’ve been bombarded with some serious health issues.  I’ve bounced from place to place just trying to stay out of the shelter, losing a decent amount of my possessions along the way. I’ve lost a few thousand dollars I can never get back.

But I’ve learned that life isn’t about having money and things. It isn’t about how long you have to live. It’s about the people you have in your life. It’s about how you choose to spend the time you are alive. I may or may not have a long life ahead of me, and these people may not be my biological family, but that doesn’t matter to me.

I am learning to live the life that was meant for me, not the life my mother chose for me.

Don’t shatter my fantasy

I’m juggling a lot of emotions right now. Anger. Sadness. Mostly anger, though. I’m not really sure I want to feel any of it, but I think I have to. I’ve buried enough anger throughout the years to know that burying it doesn’t make it go away.

Anger is not a dead body that stays forgotten beneath the surface once you bury it.  Anger is a seed that grows into weeds that grow and take over until you dig them up. The anger seeps into everything you do, until the day you dig it back out. But by then it takes so much effort to get rid of the anger, that you start to question why you buried it in the first place. It takes much more effort to bury and dig than to embrace and release.

So I am letting myself be angry. I’m not burying anything. But now my problem is directing my anger in the right place.

At first, I directed the anger towards my therapist. I left our therapy session on Thursday uncomfortably angry. I felt the walls of my life breaking down and she was the one doing the breaking.

I shared a part of my childhood with her, a part that I had never connected to anything other than childhood oddity. I’ve shared it with other people over the years, largely because it was one of the very few parts of my childhood that I didn’t associate with anything bad, so never felt any pain in sharing it. Some people thought it was funny, and some were grossed out. But no one ever thought it was sad. That is, until Thursday.

Don’t you think that’s sad?

What? Why does she think this is sad? It’s not. Please laugh. Please be grossed out. Please be something, anything, but please, don’t make this sad.

The thoughts started running through my mind. Why didn’t I realize this all before?  This wasn’t just a weird childhood behavior. Healthy children don’t save their poop and hide it. But I did. I held on to it because I didn’t want to lose any more pieces of myself than I already lost. It is sad.

But I couldn’t connect with the sadness right away. Instead I connected with anger.

I spent all these years believing in the innocence of something only to have it all turned upside down. Why? Why is this being taken away from me? I’ve already lost so much, and now I’m losing things I didn’t even realize I never had to begin with. I lost my good family. Now I’m losing my good childhood. This wasn’t just about the poop. This was about all of the snippets of my childhood that I held onto as being good and innocent. They’ve all been ripped away from me.

I believed in a fantasy, much like children believe in Santa Claus. But children don’t believe in Santa forever. Eventually someone comes along, tells them the truth, and shatters the fantasy.

And there my therapist was, telling me the truth and shattering the fantasy of my childhood. And I was mad. Mad at her for taking this good away from me. Why did she want me to see the truth? Why couldn’t she just let me believe in the magic a little longer? Doesn’t she know I’ve lost enough already?

I didn’t say anything. I swallowed my anger and let it burn, because part of me knew that this really wasn’t my therapist’s fault. It was mine.

I didn’t see the connection all this time. It all became so obvious when my therapist started talking about it, but it was everything I should have already known, that I did already know but chose to ignore. It was my fault. The truth was there and I avoided it the whole time. I rationalized what shouldn’t have been rationalized. I minimized something that wasn’t minimal at all. This was my fault. Now I am angry at me.

I have been putting so much time and energy into holding onto pebbles, holding onto the smallest bits of seemingly neutral life experiences, that I’ve been ignoring the giant mountain of trauma right behind me. I don’t want to acknowledge that those pebbles aren’t really just pebbles; they are actually pieces of the mountain that managed to break off and roll down without hurting me.

The realization that those parts of my childhood that I have been holding on to for so long are not what I thought they were is hard to accept. It’s another loss, in  my already overwhelming abyss of all I’ve lost already. It’s a deep sadness that I am not sure I can ever get out of.

I am angry. I am sad. Now make it all go away.