To know what safe is

I don’t wanna be afraid
I don’t wanna run away
I don’t wanna be here fading
It’s more that I can take
I’m never gonna be the same
I threw it all away
I don’t wanna be here fading
Just let go

This song played today (Red – Let Go). And even though I’ve heard it dozens of times before, today it stuck with me in a way it hadn’t before.

I am in fear. Every day of my life, I am scared. And it’s frustrating, because I believed that once I got away, I would be safe. But I don’t feel safe.

I don’t think it matters where I live. I’ll still be afraid. Even though I have been in the safest place I have ever been in my life, I’m still just existing here, waiting for her to find me again. My heart still drops any time I get a handwritten letter in the mail. I still get anxious any time someone new follows my blog, wondering if it’s really her. Because why would she stop? She’s already done it before. She’ll do it all again and more.

I told myself I would lead a hidden life when I got out, but I didn’t. I wasn’t cautious enough. I took a job that put my name out there. Anyone who googles my name will find a plethora of work I’ve done and articles I’ve written. I’m not a nobody. I’m not hidden. I am exposed. And that scares me. If I had just stayed silent, if I had just blended in with society instead of writing and speaking out, maybe I would feel safe. Maybe.

I haven’t been writing like I used to. I haven’t published an article in over a month.  All I can think about is her reading it and finding her way back to me. All I can think about is her reading it and knowing how much she has ruined me.

I haven’t been able to sleep. I’m often awake for two or three days at a time. Severe insomnia, they say. I’ve tried everything short of a self-induced coma. But I don’t think it’s anything Medical keeping me awake. I can’t go to sleep, because I’m afraid. I keep having the same bad dream with her in it. I’m standing in line at the grocery store and there she is, in the line next to me. And I freeze. That’s as far as I get before I wake up shaking.

I don’t want to sleep, because I’m afraid to know what happens next. I don’t want to sleep, because I don’t want her to find me in my dreams. I don’t want to sleep, because I don’t want to relive her terror in my nightmares.

I can’t tell the difference between the past and the present. I know she’s not here with me, but I feel like she is. I spend my days in fear of punishment that will never come, because she’s not even here to hurt me. I hide under my bed some nights in fear that she will come into my room, yet I’m in a house that she doesn’t, has not, and will never live in. I tell myself I can’t do things, because I’m still living in a time when she makes all the rules and I need to oblige.

I am living my life in fear, wondering when I will have to run again. Wondering what threat will come next. Wondering where my mother is, because as long as she is alive, I will always be in danger.

My therapist asked me today what I thought feeling safe was like. I couldn’t answer. I’m not sure I’ve ever felt it. I’ve only known varying degrees of unsafety. 

I am tired of being afraid. I am tired of running. I am tired of this kind of life. A life ruled by fear. A life with me fading. A life being ruined by a woman who doesn’t deserve to have that power.

I just want to know what safe is.

Trapped

I can’t talk about anything.

I can’t write about anything.

Everything is trapped. My words, my thoughts, my emotions. In the prison cell that she created. And I don’t know how to get any of it out. It’s suffocating me.

I’m still afraid. Afraid of her. Afraid of the truth that I will never be free.

She speaks inside my head. She reads my words. She is everywhere, even when she’s not.

Facade of a Family

I’ve sat at my computer several times this past week, planning to write what was on my mind. Yet every time I tried to write, I couldn’t do it. The emotions were too overwhelming and I ended up in tears.

I couldn’t really understand why. I’ve written quite a bit about emotionally laden things, and I’ve always been able to write through the pain. But this was different. This pain left me silenced in a way I hadn’t experienced before.

It’s my fault, though, at least in part. I have been holding on to something I should have let go of years ago. I knew it wasn’t good for me. I knew that it would only continue to cause me pain. But I held on, because I didn’t want to lose that piece of something that was part of my identity: my family.

I could never quite understand it, how anyone could stand back and allow someone to be hurt over and over again. I wanted to believe that no one else knew, I wanted to believe that we were so good at hiding the pain that no one else could see it. It was much easier to believe that than to believe that other people knew and chose to do nothing. Those beliefs allowed me to hold on to the very tiny bit of self-worth I had left.

That is, until that false reality was ripped away from me, and I found out people really did know what was going on. Some people knew for years. YEARS. Yet no one ever said a thing. No one ever helped. Didn’t want to cross any lines. It wasn’t my place.

That pain is inexplicable. At that point I believed I was worthless. I wasn’t worth being helped. I wasn’t worth being protected. I wasn’t worth being saved. If I was, someone would have said something, someone would have put an end to my pain. All I wanted to do was matter enough to someone, I wanted to be loved and cared for by someone. Instead I was left with nothing but a facade of a family.

I still played along. I still kept up my end of the facade, hoping that one day  they would change, hoping that one day I would be worthy enough to be saved. But time has only shown me how much I still don’t matter. Time has only shown me how much I don’t belong.

There must be something wrong with me. There’s no other explanation. How could someone stand there and ask me to protect their child from my mother, when they knew full well I could not even protect myself? You know how that made me feel? Worthless. It was okay as long as I was the one being abused, as long my mother didn’t hurt anyone that mattered. They were the ones that needed protection, protection I obviously wasn’t worthy of.

But I still held on to hope. Maybe one day I will be worth saving. Maybe one day I will be a part of the family. That never happened. Even in my darkest times, when I was in and out of hospitals, I had no one to turn to. The social workers begged me to ask family for help; there was little the system could do to help me. When I finally got the strength to give them the okay, it was only met with rejection — the same rejection I had experienced for years.

There is only so much a person can take. I think I reached that point a long time ago. Yet I still held on. I still hoped that one day, things would change and I would have some semblance of a family bond. I kept forgiving. I kept making excuses for things I’m not really sure could ever be excused. All because I wanted to experience this sense of belonging, this notion of worth, this concept of being part of a family.

I realized this past week that I can no longer hold on to that hope. It is wearing away at me. I want something that has never been, and never will be. It hurts my heart to be ignored. It hurts my heart to know that friends and neighbors will always be more important, more worthy than me. I can’t change that. I can’t make myself part of a family that has continuously shown they do not want me.

And that’s hard to acknowledge, because I’ve wanted for so long to just be part of my own family.  Instead, I am the reject, and nothing I can do will ever change that.

I made a choice this weekend. I could have reached out. I could have made another desperate attempt to be included. But I feared that the pain of another rejection would be much harder than just not knowing. I made the choice not to put myself through that any more. I made the choice to put myself first, instead of my ‘family’.

It didn’t take the pain away. My heart is still broken. I still cry. I still feel lost. But I am no longer lonely.  

There is nothing wrong with me. I am only the reject of my biology, of the people who carry my last name. I have been accepted, cared for, and protected by strangers who became friends, and who have become more of a family than any biological family has ever been.

My only mistake has been caring too much and too deeply for something that was never there — a facade of a family.

Beneath the Fat

Are you sure you aren’t diabetic?

You don’t look like you’re starving.

You shouldn’t be eating that.

Not hungry? I find that hard to believe.

You should lose some weight, then you won’t be so sick.

These are just some of the things that people have said to me over the years — most of them said more than once.

I get the diabetes assumption quite a bit. When I had surgery to repair my Lisfranc, I had a nurse ask me SIX times if I was sure I wasn’t diabetic. Six. Times. I understand asking is standard procedure, but asking six times because you just can’t get over your assumption that my weight must mean I’m diabetic is not standard procedure. That bothered me. 

And then there’s the people who see you eating a cookie and tell you that you should be watching your sugar. Why? I’m not diabetic. Never was. But thank you, because now I feel horrible for eating.

You don’t look like you’re starving. This goes right along with not believing I’m not hungry. I’ve had people I considered friends say this to me when I told them I didn’t really eat much. It’s not funny. It’s frustrating. Starvation isn’t always skin and bones. Starvation doesn’t always have an obvious “look”. Trust me, I’ve experienced it. Sometimes forced upon me, and sometimes self-induced. But no one sees the lanugo growing on my body or the rampant malnutrition running through the blood in my veins. They just see my weight and assume I must sit at home all day and eat.

You shouldn’t be eating that. This comes from so many people, friends and strangers. I once had a coworker scold me for eating a Poptart; it was the first thing I had eaten in days. Needless to say, that was the last thing I ate for a while, because what he said made me feel ashamed for thinking I should eat. 

I’m on a high-sodium, high-protein diet for health reasons, and people have felt the need to comment about me adding salt to my food or eating meat. It’s not good for you! Your blood pressure. Well, actually, it is good for me, because my blood pressure is low. I know, it’s hard to believe. Because all you see is my weight.

I am not in the best of health. There’s no denying that. But when you hear about it, don’t jump to the conclusion that I am suffering because I’m fat. I don’t have high blood pressure, diabetes, or high cholesterol. I didn’t get lung disease from being overweight. My autonomic nervous system didn’t turn to shit because I’m fat. I can’t fix my health with diet, because it’s not fixable.

People look at me and see the fat. They see I’m overweight. They see me struggling. So they make assumptions. Dangerous assumptions. Hurtful assumptions.

They don’t know that I am literally half the size I was just a few years ago. They don’t know I spent time in the hospital because I was severely malnourished from not eating. They weren’t there when I tediously calculated every calorie I took in, making sure I would not go above 500 in one day. They don’t see the concern in my doctor’s eyes whenever I get weighed and have lost too much weight too rapidly.

They don’t know how much I struggle some days just to eat. They don’t see me weigh myself every morning obsessively, trying to determine if I deserve to eat that day. They don’t hear the inner battle I have to go through before I sit down to eat a meal. They’re not there when people who care tell me I need to eat because they know it’s been too long.

They just see the fat.

They don’t see the eating disorder ravaging beneath.

It’s been so easy for me to deny I have a problem, because it’s been so easy for me to hide the truth beneath the surface. Other people’s beliefs became my words. Whenever I’d get feedback or suggestions that I had an eating disorder, I’d just tell them I don’t have an eating disorder; I’m fat. I’m not starving; I’m fat. I’m fine; I’m fat.

I got so angry months ago when the PHP I was in diagnosed me with ED-NOS, atypical anorexia nervosa. I don’t have a problem. I don’t look like I’m starving, so just leave me alone. Why couldn’t they just be like everyone else and only see what I was on the outside? Why did they have to dig deeper? Why did they have to be worried when no one else was?

It took me some time to realize my anger was displaced. As much as I wanted to be angry at the program for giving me the diagnosis, I was really angry at everyone who refused to see my struggle, everyone who made it harder for me to cope with my ED because they couldn’t see past my outward appearance, everyone who purposefully and not-so-purposefully contributed to my guilt about eating.

I’m not your typical person with anorexia. There’s a lot of things about me that just don’t fit the norm. And that’s fine, because nothing in my life has ever been typical. It’s hard for people to understand that. I only understand because I’ve had to.

It’s difficult in general when you struggle with an ED. It’s even more difficult when you add people and ignorance into the mix. All of those comments about my weight and what I should or shouldn’t eat only made it harder for me to recover. They made me believe that I still wasn’t doing enough. I wasn’t thin enough. I wasn’t worthy enough. I’m not enough. Every time I managed to take three steps in the right direction, someone would make a comment and push me back six steps in the wrong direction. It’s a vicious cycle that continues to hinder my healing.

I’m still struggling. I think I may always struggle a bit. There are days when I manage to eat like a “normal” person. But there are still days when I conveniently forget to eat. There’s still days when I self-sabotage. It’s been difficult for me since I got sick. I’m not able to move around like I used to. The medication I have to take causes water retention and weight gain. I think of ways I can counteract it all, ways that really aren’t healthy, ways that will only end up hurting me even more.

It was much easier for me to sit there and self-destruct when I had no one who cared enough to stop it. It’s not so easy now.

And I know that’s a good thing, but it doesn’t make the struggle any easier, and it doesn’t erase the shame. I’m still scared of myself. I’m still afraid of the thoughts that go through my head, the fear of gaining weight that eats me up from the inside. I’ve been taught to attribute my worth as a human being to my weight and my actions, and I’m not sure how to remedy that when it seems to be ingrained in a part of my brain I can’t seem to access.

This was all so much easier when no one saw what I hid beneath the fat.

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.

Fired (Up)

I came home Monday afternoon expecting to enjoy the rest of the day — the anniversary of my freedom.

I checked the mail and saw a letter from my employer. I opened it. There was a piece of paper with my name and information on it, with directions for filing for unemployment, with a permanent separation date of June 6th.

I never quit my job. I wanted to go back as soon as I could. I never wanted to be out in the first place. When I passed out at work that day, the manager told me I would not be able to come back until I had medical clearance in writing. I told her it was going to take me awhile to get it, and she said that was okay — that my health was first priority. And I have been trying ever since to get a note, but because of my history of heart issues and fainting, no one wanted to take on the liability and told me I needed to see my cardiologist.

So I planned to wait until my next appointment, which was then cancelled because my cardiologist decided to leave the practice on short notice. I rescheduled with my original cardiologist, but the earliest appointment I could get was July 11th. Fine. I figured everything was okay because my manager told me to take all the time I needed.

When I got that letter, I didn’t understand what happened. No one contacted me before this. No letter, no phone call, no e-mail, nothing. As far as I knew, everything was still okay. I had no idea I was going to be let go. I never lost a job before — not like this.

It was hard enough for me to leave the job I had for nearly two years, the job I got just weeks after running away. But that was a choice I made in order to have a better, safer life — and a place to live. I was in control.

But this was not in my control. This was not a choice to leave. This was being fired. Through the mail. On the day I was supposed to be celebrating my freedom.

I tried to suppress my emotions, I tried to push it in the back of my mind, to try to think about it another day. But that didn’t work out so well, because I ended up in tears. I was angry, frustrated, and upset. What did I do wrong? I didn’t abandon my job. I was good at it. I performed well even in the few weeks that I was there. And I did everything I could to try to get back, and I was still trying. But it wasn’t enough.

I felt like a failure. I can’t keep a job. I can’t even keep myself upright. How am I supposed to get another job? How am I going to pay my bills? No one wants to hire someone who was fired, and surely no one wants to hire someone who passes out frequently. Not disabled enough for disability, but not able enough to work. It’s occupational entrapment.

I managed to stop crying for a little while, but any chance of enjoying the rest of the day was gone. I made it through dinner, but then I felt the same emotions coming back. I went outside. I wanted to badly to run away, to take my cigarettes and smoke my feelings into numbness.

And it took everything in me not to do that, because I knew it wasn’t going to solve anything. I knew it was going to affect other people, and affect me. So I sat with my emotions and a bottle of beer. I let myself cry. I let myself be angry.

Then I looked up at the sky. I watched the fireflies fly. I watched the neighbor’s dog waddle through his yard. I looked around me. Peaceful. Quiet. Freedom. For 29 years, the only way I could watch the sky was through my bedroom window. But that wasn’t my life anymore. This was my life. Full of feelings and losses, but also full of fresh air, fireflies, and the freedom to see life from the outside, instead of inside my window.

I was still upset, still angry, but it no longer overwhelmed me. I came back inside. I sat on the couch and watched TV. I ended up falling asleep there, with one dog sleeping behind my head and another sleeping right at my side. And I couldn’t imagine life any other way. Safety, a family, friends, a home, dogs, and freedom.

I’ll figure out the rest, somehow, some way.

Two Years of Freedom, Part 3: Growing

There are many aspects of growth. It’s really complex when you think about it. Just because something grows, doesn’t mean it’s thriving. There’s growth in surviving, too. But it’s a different kind of growth. It’s not full. It’s not healthy. It’s growth that never reaches its full potential.

I’ve thought a lot about growth. When I think about the first 29 years of my life, I know I grew. Physically, emotionally. But that growth was stunted by the environment I was in. I was in survival mode. I grew in ways I had to in order to stay alive. But that didn’t make me healthy. That didn’t make it all right.

And then I think about where I am now. Two years of freedom; two years of tremendous growth. I wrote a commendable thesis, graduated college, established my support organization, started grad school, became a notable writer, co-wrote a book, and even started work on a second. It’s no longer about surviving. Now it’s about thriving.

But even that tremendous growth could not have occurred without the darkness I experienced before it. The losses I experienced, the grief and the pain, they were part of my growth, too. They were sitting underneath the roots of my existence this whole time. It just took the right environment for the real growth to take place. It took light to overcome the darkness.

When I first thought of burning those cards and letters, my initial plan was to bury the ashes in the yard. But as I thought about it more, I found it to be too dismissive. Even though I let go, those feelings and those experiences were still a part of who I became.

So I saved the ashes, and I spread them across the bottom of a planter. Then I added in some dirt. And then I placed the stones of what I’ve lost on top. They were the stones I have been holding on to for almost a year now: Family, mother, father, self, support, love, purpose, and hope. These were the losses I experienced in childhood, the losses I was still experiencing even after I ran away.


I no longer needed to carry those stones with me. In a way, I was letting go of them. But I was also acknowledging what has come from them. I lost my family, but I’ve been making a new one along the way. I lost my mother, but that loss has pushed me to help others. I lost my father, but that loss has driven me to take better care so I don’t end up like him. I lost my self, but I am working to find myself again. I lost support in more ways than one, but somehow that loss sent me to where I am today, surrounded by supportive people. I lost love in the sense that I never got to experience it before, but now I have — through those people who continue to support me. I lost my purpose because I believed for so long that I had no purpose. But I have found my purpose in using my experiences to help others. I lost hope a very long time ago, as a child who grew up believing that there was no way out of the pain but to die. But I now know what life can be; I know that I don’t have to die. All of these losses created me. They led to my growth.

And now they are supporting a new growth, because above the eight stones, I planted eight peace lilies.

I chose that plant specifically, because in many ways it was symbolic of my life and growth. Peace lilies can survive with very little water and very little light. But darkness slows its growth. It doesn’t grow as fully and beautifully in the darkness as it does in the light. It survives in the darkness, but thrives in the light. Just like me.

The peace lily is also a symbol of grief, of innocence and rebirth. And in many ways, my freedom has been a rebirth. What lies in the dirt below the seeds, my losses, the ashes of my pain, they are what came before me. They are what led me to my new life. Parts now unseen, hidden below, but nonetheless affecting.

I no longer carry those cards, those letters, those gravestones, or those stones with me. They are all part of the base in the growth of beautiful new flowers, just as they are all part of the growth of me.

My peace lilies are growing in the light now, just like me.