Six Months of Stability

Last Friday marked six months of stability for me.

I use the term stability loosely, because in quite a few ways, I am anything but stable. My health is kind of a mess. My eating disorder has hit some pretty low lows. My emotions waver from non-existent to overwhelming. I’ve been spending 30 to 40 hours a week in intensive group therapy. I am not exactly the picture of stability here, and I know that.

But stability is much more than that. For me, stability started the day I found a safe place to live.

I didn’t realize it at the time. I thought that when I ran away from home and moved down here, that was stability. But I mistook freedom as stability when it really wasn’t. It was a change in environment, an improvement in many aspects, but it wasn’t stability. I tried so hard to move forward by going to therapy twice a week, yet I was still struggling. I was stuck because I was spending all of my energy trying to manage the stress in my environment that I had nothing left to put towards managing myself.

It took a long time (and a bit of outside influence) for me to realize that the way I was living wasn’t healthy or stable. So I worked (with help from others) to change that. I changed my environment. Things started looking up; not great, but getting there.

But that didn’t last, because after a month, I ended up broke and homeless. Well, this is great. Now I am the most unstable I have ever been. I was about to give up. But then, a friend stepped up and offered me a place to live. And that’s when the real change started. Because it was way more than just a place to live.

These past six months have been some of the hardest, yet some of the best months of my life. For the first time, I am living somewhere stable. I don’t have to hide in my bedroom. I don’t have to sleep outside. I don’t have to worry about how I’m going to eat because there is always food available (whether or not I am willing to eat it is another story, but…progress). I don’t have to worry about getting yelled at, or put down, or hurt. I can make mistakes and still be cared for because care isn’t conditional here.

I’m not used to this life. I’ve never had anyone there to tell me I need to eat, that I need to take my medication because I’m getting sick, that I need to go to the doctor, that I need to go to treatment. It’s a completely different dynamic. Before, I could just self-destruct and it wouldn’t matter because no one would notice, no one would care. That’s just not the case any more. I don’t just affect me; I affect others.

There’s been so much change over these last six months. Even though my health has declined a bit, I’ve managed to cope with it somewhat well. There are still (many) times when I need a push to take my medication or to make a doctor’s appointment, but I do it (eventually). I experienced the loss of the first dog I came to love last weekend and I’ve been able to grieve his death with spiraling out of control. That was a first for me. I also had support, and I was able to support others. Another first.

Even in the hardest times, I’ve managed to find happiness in the smallest things. Playing with the dogs. Going out to dinner with the family. Shopping at Walmart on a Saturday. Watching TV with a friend. Playing cards with the kids. Baking cookies and making dinner for the people I care about. These are the things I try to remind myself of when I want to give up. The brief glimmers of something better. The somethings I was never able to do, let alone enjoy before.

I take pride in the small accomplishments. Making it through the Costco parking lot without freezing from fear. Sitting through dinner at a restaurant without having an anxiety attack. Shopping in the grocery store without running away before I’m done. Eating a meal in its entirety. Going to a party without getting drunk. Trying new foods. Going to places I’ve never been before. Little things that no one really celebrates because it’s normal for them. But it has never been normal for me.

Yea, I’m a mess. I can’t work. I survive off medication. I spend most of my days in therapy.

But I’m not the same mess I was before. I have safety and stability. I have food on the table. I have people who listen to me and help me. I have reasons to not give up.

I guess I’m a little more organized chaos and a little less clusterfuck.

Art

I haven’t been able to write much. There’s a lot going on, both inside and outside of myself. I’m hoping to write soon.

But as I continue working to get words on my screen that make sense, I thought I’d share some artwork (though I’m not sure it qualifies as art) that I’ve done in my time at PHP.

I’m not an artistic person. Sitting in an art class makes me want to flee. But it’s not an option when you’re in group. You have to do something.

The first time I was in art, the therapist asked us to create something surrounding the words “I am”. While most people went right to drawing images, my mind went to writing words. But every word that was popping into my head was negative. It wasn’t that those words were untrue — they were my reality for a very long time. But they weren’t anymore. I didn’t want to ignore those parts of me. They still made up who I was. But I am more than that now. So for each truth of my past, I wrote the reality of my present. The totality of who I am.

That was one art class down. Only dozens more to go. So I decided to do a collage. At first, I chose to do one because it would take up a lot of time. I could spend several (collective) hours just flipping through magazines, killing time so I wouldn’t have to do anything artsy. And that’s exactly what I did. I flipped through at least a dozen magazines, cutting out whatever stood out to me. Words, phrases, pictures. Before I knew it, I had a whole baggie full of magazine clippings.

As I went through what I had cut out, I realized that every thing I chose had a purpose. Words that described me. Phrases that inspired me. Pictures that I liked. This collage is me. Every piece has a meaning. Each section is a story. Past. Present. Future. It’s me.

I may not have been able to write much these last few months. But these are my words; just in a different form.

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.