Work(in)ability

After an incredible amount of time and frustration, I was finally able to get a copy of my birth certificate, which then gave me the ability to get a valid ID so I could get a job. While my writing work pays, it’s definitely nowhere near enough to live on.

I was scared but excited to start work again. I haven’t really been in the workforce since I got my cardiac implant surgery a year and a half ago. I’ve missed that sense of purpose. I’ve missed that feeling of normalcy, of being a capable, competent adult.

I had almost forgotten — or purposefully chosen not to remember — what work was like for me in the few months before it had ended. Things had gone downhill. It wasn’t from the knee injury that left me on crutches. It was all of the mysterious issues that started wreaking havoc shortly after I was hospitalized with the flu. When I started passing out for no reason. When I started using a wheelchair because I was getting too tired at work. When I fell off the front porch because I passed out while closing the door on my way to work one morning, scraping the entire side of my face.

This was going to be different. This job was going to be easy. No one would have to worry about me. No one would have to know I’m sick. I didn’t tell them anything during my interview. Why would I? No one is going to knowingly hire someone with my medical issues. I look normal on the outside. Capable. Healthy.

I breezed through orientation like it was nothing. I started taking care of guests like I had been working there for months. It got slow for a bit, so a few of us were talking. Somehow random math problems came up, and I solved them in my head. It then came up why I was working there if I was so smart. I didn’t go into too much detail, just that I got sick awhile back and had to take a break. I saw it as an opening to say, very light-heartedly, that if I ever pass out, not to call 911, that I’ll be fine and up in a few minutes. It’s become an annoyance when I pass out in public and they call 911, only for the hospital to try to keep me for observation when I know they are not going to find out anything I don’t already know.

To my relief, her reaction was calm. She said it was good that they know so they can be prepared in case anything happens. I didn’t feel any shame in that moment. I felt okay.

It wasn’t until yesterday, my first full shift of work, when I realized that my abilities are not what they used to be. Fifteen minutes into my shift and I was already short of breath. I could feel my heart racing, which only made it harder to breathe. I wasn’t even doing anything but walking up and down a few stairs and walking across aisles. That was it. My heart rate tripled like I was running a race and would not slow down. My coworker kept asking if I was okay. I know he must have seen it in my face.

Five hours in, and all I had gotten was two minutes to sit on the toilet and pee. I was burned out. I could barely lift mats to clean. I felt weak. I felt sick. I felt useless.

I cried as soon as I left, and again as soon as I got home. I’ve been crying off and on today. I used to be able to do everything. I unloaded trucks. I moved furniture. I lifted grills. I did anything my male coworkers could do. I could work from opening until closing. I had energy. I had strength. My heart was functioning. I was okay.

And now I struggle with everything.

But no one notices. And if they do I immediately push them away. I refuse to use a walker or a wheelchair. Because I don’t want people to see.

I’m tired. I’m tired of walking out of my house and hurrying to find the nearest bench because I’m so dizzy I’m afraid I’m going to pass out. I’m tired of laying on the floors of public restrooms just to avoid a big scene. I’m tired of needing clothes in multiple sizes because I don’t know how long it’s going to be before my digestive system starts working again. I’m tired of not being able to do my school work because my mind is so foggy I can’t think. I’m tired of mopping my bedroom floor every other day because I’m rapidly losing the ability to control my bladder.

I’m tired of the medications, the hospital stays, the doctors’ visits, the specialists.

I’m tired of the loneliness. Everyone else I knew is out living their lives with their families, advancing their careers, having babies. I’m struggling just to get out of bed.

Three Years of Freedom

My three year freedom anniversary was three days ago. I wish I could say that I celebrated it in some way, but I didn’t.

And that is not the normal for me. Ever since I ran away, I have celebrated every milestone — one year, 500 days, two years, 1,000 days. I’ve always done something symbolic, something meaningful to celebrate the day. The celebrations helped remind me of where I was, and where I came from. I know some people thought it was a bit much, but you never really understand just how important these days are unless you’ve escaped from hell. And I know many of you, unfortunately, can understand that.

But as my three year anniversary rolled around, I didn’t feel like there was anything to celebrate. Over the last few months, my life has fallen apart. I found myself homeless. And even though I found a bed in a shelter, that stay ended up damaging me even more. I wandered the streets. I slept on friends’ couches. And out of desperation, with no options left, I found myself on a bus traveling west to stay with someone I never actually met other than through online conversation.

How did I end up here? Why did I end up here? I still don’t understand what happened. I still don’t understand how, despite everything, I am ineligible for any type of assistance. If I was an alcoholic, or a drug addict, I could get help right away. In the midst of my desperation, I actually considered breaking my sobriety because I knew it was the only way I could get help. But why should I have to? It makes no sense.

I’m angry. And not just because I am homeless. Not just because my only option was to leave the state where I had everything, including my medical care, in place. I’m angry because I’m sick.

It’s not like being sick is anything new to me. I’ve been sick for awhile. But I think, in that time, there was a part of me that didn’t think it was a really big deal. Until I started getting really sick. Until that hospital stay back in May when everything took a turn for the serious. Pulmonologists, infectious disease specialists, doctors in and out of my hospital room telling me that I was very sick. This wasn’t just a cold. This wasn’t something that was going to go away. I must have answered a hundred questions as the doctors tried to figure out just how I ended up this way. It doesn’t make any sense, they’d say. Little did they know, nothing in my life has ever made much sense.

As much as I hate to admit it, I was (and still am) scared. A part of me wanted to run away from my medical problems. If I just left my doctors, left the hospital, that somehow my issues would just disappear. Until five days into my stay in another state, when I passed out at lunch and found myself at the hospital once again.

The hospital did chest x-rays just to be sure everything was okay and there was no pneumonia (as I had a massive thrush infection — completely unrelated to me passing out). The doctor walked into my room and I could see the confusion and concern on his face. There’s no pneumonia, so that’s the good news, but — before he could finish his sentence, I told him it was okay, that I knew I was sick. I realized I’m going to have to have this conversation every time I end up in the hospital. A consistent reminder that I’m sick, no matter how hard I try to pretend like I’m okay.

How is this fair? How is any of it fair? I fought so hard to get out alive and this is where I end up after three years. My mother is free. She is healthy. She doesn’t struggle.

And I am nowhere, sick and struggling.

All of the things I learned along the way have left me with nothing. The people that said they would support me have turned their backs on me. The system that says it helps those in need has left me stranded.

So what’s left to celebrate?

1,000 Days of Freedom, Part 5: Hopes

I decided to end with something a little different from what I had done before. I had acknowledged my past and my present, so I thought it was important that I also acknowledge what I hope for in my future.

I chose sand dollars to represent my future hopes. Sand dollars are hard to come by, but when you find one, they are said to bring you good luck. Some traditions also say sand dollars symbolize peace.

I chose six sand dollars, and wrote one hope I have one each one.

To become psychologically, physically, and financially stable.

It’s been a struggle to achieve stability in any aspect. Psychologically, I’m not the best. I spend way too much of my life in therapeutic settings. I can’t take most medications, and the ones I can take don’t seem to work. They’re always telling me it’s going to take a lot of time to get better; it’s going to take a lot of time to undo 29 years of programming. Those who know my story tell me I’m doing great considering what I’ve experienced. I could have died. I guess they are right.

Physically, I know I’m never going to be 100%. My health issues are not curable. Some will get progressively worse over time. I just want to be able to feel better, to gain whatever control I can have, if that’s even possible, over my illnesses. I want to be able to stand up and walk without people being afraid I’m going to drop.

I want to be able to live with more than $1 in my bank account. I want to be able to go out without having to sell something to pay for the bus. I don’t want to be a burden on others, even if they tell me I’m not. Whether it’s financial assistance or some kind of work, I just want to be more secure and stable.

To get justice for myself and others.

I still feel responsible for leaving people behind, for leaving my mother behind so she could hurt others. I know it’s not my fault, that her actions are not my responsibility. But I long for justice. I want my mother to be punished for what she has done, for all the crimes she has committed. I want that for me, and for the other people she has hurt. I know it’s difficult to go through a trial. I know a lot of therapists don’t recommend re-traumatizing yourself for the sake of justice. But I hope one day, I can be strong enough to go through it. And if I can’t, that I can find some other way to get even just a semblance of justice.

To know my purpose in life.

I never had a chance in my first 29 years to learn who I was, to gain any sense of what my purpose was in life. Even after I ran away, I spent so much time focusing on therapy and work that I really didn’t spend enough time trying to find myself. I thought my purpose was to be a therapist and help others like me, but after the incident with my grad school that led to my removal, I lost that sense of purpose.

Perhaps it’s not about how far I can get in my education. Perhaps I don’t even need a degree to do what I was meant to do. Maybe I am meant to be a writer. Maybe I am meant to speak out about abusers like my mother.

My therapist always asks me if I’ve built a skyscraper yet. He said in one of our first sessions that I am the type of person who has the intelligence and the drive to do amazing things; he said one day, I’m going to have my own skyscraper. I have no desire to do that, but I understand what he’s saying to me. I can do things. I just have to figure out where to start.

To help others like me.

I’ve already started to do this, I think. I put myself out there when I started writing professionally, and I’ve had so many people reach out and tell me how much my writing and my honesty has helped them. I know I haven’t done much with PAFPAC lately. It’s been difficult to manage everything I am doing by myself, tired and sick. I want to do more one day, but I need to work on myself first.

To know what it’s like to live without wanting to die.

I’ve been wanting to die since I was six years old. Not a day goes by that I don’t think, even for a moment, that dying would be so much easier than living. I’m chronically suicidal to the point that it’s become normal to me. The thoughts come up at any time; some triggered by events or trauma anniversaries, but some don’t even have a reason to be there.

It’s exhausting. It’s like I’ve been fighting a battle that will never end. I just want to live without those thoughts. I don’t want to have to worry about waiting for the urges to get stronger, because I know from experience they will get stronger. I want to live a day without the weight of that on my mind. Just one day.

To accept that I’ll never know or understand why.

I think this is the most difficult hope for me, and yet the most necessary. I’ve spent years trying to figure out why my mother did what she did. I’ve read every book on sociopaths and narcissists. I’ve studied psychology and neuroscience. I’ve shared with others who have had similar experiences and I still can’t come up with a reason why. I need something to blame; for some reason, blaming her hasn’t been enough. It’s keeping me stuck.

I’ll never be able to understand why I have this life. I’ll never understand why I had to endure things that no child, no person should ever have to endure. I’ll never be able to rationalize the pain and hurt I feel every day of my life. Sometimes, there aren’t reasons. Sometimes, we will never know why. I will never know why. And that’s okay.

I will be okay.

Don’t go looking for the reasons
Don’t go asking Jesus why
We’re not meant to know the answers
They belong to the by and by

–Chris Stapleton, Broken Halos

1,000 Days of Freedom, Part 3: Truths

In all this time, I’ve learned a lot of things. While I buried what I learned to be lies in the ocean, I needed to hold on to the truths that I learned.

I didn’t want to do stones; I wanted to do something different. I wanted something symbolic, something that reminded me of the place I was in. I thought about the beach. I remembered how, when I first planned out my escape, I walked along the beach and looked for sea shells. I was looking for certain ones, which were hard to find among the seemingly endless amount of shells that had washed up.

I eventually found them. I also found some really beautiful shells, completely by accident. I didn’t look for them, I just stumbled upon them in the search for my special shells. It made me think of the truths I’ve come to learn in these last 1,000 days. Some of them I went looking for; others I just stumbled upon on the way.

So I got sea shells, and wrote six of the most important truths I came to learn inside them.

I deserved to be loved and nurtured.

There is nothing — NOTHING — a child could ever do to deserve to be abused, tortured, raped, or assaulted. I didn’t do anything to warrant that. I was a child who deserved to be nurtured and taken care of, not abused and neglected. I deserved love and care, hugs and kisses, kindness and warmth. I didn’t get any of that. But I deserved to get that. I deserved to have a childhood without fear and pain. I deserved a home I could feel safe in.

I can speak the truth. She can no longer silence me.

I had no voice for years. I grew up in fear of telling people who my mother was, and telling people what was going on. I thought I was lying to protect myself, but I was really lying to protect her. I know that now. Now I can use my voice, because I am free. I will continue to speak the truth because it’s my truth to speak. I am no longer afraid to speak. I am no longer shamed to admit what has happened to me. I will not be silent.

I am a good person who deserves good things.

Even after I ran away, I lived my life for others more than I did for myself, because I still believed that I was somehow less deserving than others. I deflected compliments as if they were poison, because I believed I didn’t deserve them. I understated my achievements because I believed I didn’t truly earn them. But I’ve come to realize that I do deserve the good things — whether they be compliments, promotions, awards — even food. I am a human being. I am a good, kind, genuine person who deserves some good, as hard as that may be for me to acknowledge.

Family isn’t biological. You can make your own family, and I have.

Despite what people have said to me, even recently, my family is not the people who are genetically linked to me. My father may have been my sperm donor, but he was not my family. My mother may have given birth to me, but she is not my family. The others who never intervened, they are not my family. My family is made up of the people who support me and care for me and love me for who I am. They are there for me no matter if it’s a good day or a bad day. My family is unconditional.

I am nothing like my mother.

I’m not a sociopath. I’m not a predator. I’m not an abuser. I’m not who my mother is. I used to think that if I liked the same things as her, if I ate the same food as her, that meant that I was her. She used to change her hair to match mine. She used to take my clothes to wear them herself. People used to say how much I looked like her because she made herself to look like me. I could never separate any aspect of myself from my mother. But now I realize that physical appearance means nothing, and that shared blood doesn’t make for shared behaviors.

I can ask for help. It doesn’t mean I’m weak. It won’t get me in trouble.

I grew up never asking for anything. I never wanted to be a burden. I never wanted to be punished. I could never reach out because I knew, in the end, it would only end up getting me into more trouble. That fear carried over into my adulthood, and even after I ran away, I struggled with reaching out. There were times I needed someone to talk to, but I was too afraid to be a bother. There were times I was dissociating and needed help grounding, but I thought asking for help meant I wasn’t strong enough to do it on my own.

It’s no surprise that one of my main goals in every treatment I’ve been in — from PHP to IOP to individual therapy — has been to learn how to reach out for help. I don’t have to wait until I’m at a breaking point. I don’t have to refuse help when someone offers it. I can ask because people are willing to help me.

These truths will stay with me, as a reminder of how much I’ve learned and grown.

1,000 Days of Freedom, Part 1

It’s been one thousand days since I ran away, one thousand days since I found my freedom. And yes, as silly as it may be, I still count the days. It helps me on those days when I feel like giving up. It helps me see just how far I’ve come.

I hesitated even acknowledging today for what it was. For the last couple of months, I went back and forth on what to do. On one hand, acknowledging these milestones has helped me. It gives me something to look forward to. It also gives me a day to recognize things that I don’t take the time to really think about.

But there is also a tremendous amount of fear. When I celebrated my 500 days of freedom back in November 2016, I felt at peace with quite a few things I had been struggling with. I celebrated myself. I had a stone ceremony at the beach. I got rid of the false beliefs that were holding me down, acknowledged the things I came to learn since running away, and gave back the guilt and shame that were not mine to keep. It was a huge accomplishment for me. I felt okay.

And then days later, that all changed. I received something in the mail that I will never forget. I recognized the writing on the outside of the envelope — it was my mother’s handwriting. Inside was a poster with options to choose a gravestone. No note, just the poster with the gravestones. But I didn’t need a note from her to know what it all meant. My mother wanted me to die — that gravestone was the stone she believed I deserved.

The veiled death threats, combined with a letter she wrote and sent to me through an old friend, were enough to create an emotional clusterfuck in me. Any inkling of safety I thought I had was no longer. She knew where I lived, and I knew what she was capable of. It changed everything.

I knew her anger, or whatever it was, was clearly exacerbated by the celebration I had for my 500 days of freedom. It took a long time for me to recover from what she did, and to be perfectly honest, I’m still not over it.

So as it got closer to the 1,000 day mark, I wondered if it was worth it to acknowledge and celebrate it, fearing that what happened last time would in some way happen again. Up until a couple of weeks ago, I wasn’t going to celebrate it at all. I just didn’t think I could emotionally handle any bullshit.

Then I realized that I was letting my mother win. I was missing out on an opportunity to better myself because of a fear she instilled in me, a fear that will be there regardless of what I do or don’t do. She doesn’t have that control over me anywhere. She can’t.

I worked through all the what-ifs with my therapist last week, setting up what we would do in case anything did happen. By then I was confident that I could have this day, that I deserved this day.

I went to the beach this morning, just as I had 500 days ago. There is a lot of meaning there. Not only is it where I ran away to, but it’s also where I tried to end my life when I was six years old, the first time I attempted suicide.

Now it’s the place where I drown the beliefs that no longer serve me, the lies my mother made me believe for way too long.

Don’t take this the wrong way

I’ve been managing my impulse to isolate quite well, considering my circumstances. I try to get out of the house every day, even if it’s just to walk the dog. Some days, I just can’t do much. I’ll take a walk down the block, and I’ll just know from the dizziness in my head and the pain in my chest that I can’t do anything but rest. There are times when I push myself too much, and I always end up regretting it. But I still get out there the next day.

I could have stayed home on Easter. I could have stayed in bed all day or smoked through a pack of cigarettes in the backyard, which is what I usually do when I’m alone on days like that. But I decided to go. After all, my case worker says I should work on being more social.

It started out okay. There were a lot more people there than I thought there was going to be, most unknown to me. I stayed calm, and migrated toward people I was familiar with. I had my knee brace on over my pants (because it’s impossible to wear a full-length knee brace under anything that’s not oversized sweatpants). A friend of the family asked what happened. I told her I had torn my ACL, and wore out all of the cartilage on my knee. I stayed positive about it, though, telling her how I was still getting out and walking around as much as I could. She shared some (very) distantly related story about how her knee hurt her 40 years ago.

And then she said those words, the words that never, ever end well.

“Don’t take this the wrong way, but…”

She then proceeded to tell me how my weight was likely the cause of my problems, and how I need to watch myself, and when I feel the urge to take those “third helpings” of food I just need to stop.

As soon as I caught the gist of what she was saying, I had so much shit going on in my head that I couldn’t listen to her anymore. I just sat there quietly, holding back the tears. I wanted to scream, but I couldn’t. I was just hoping she’d stop. But she didn’t.

When the food was finally served, I stayed in my seat. All I could think about was how fat I was. My friend was encouraging me to get some food, telling me what they had. “You should eat a salad.” Before I could even respond, my friend told her that I didn’t eat that. She then went on to make another suggestion, and by that point, I had enough. I knew I was going to emotionally explode, so I got up and went outside.

I smoked a few cigarettes, let out some tears, and calmed myself down enough to go back inside. I thought I would be okay, but I wasn’t. The sight and smell of the food made me nauseated. The memories replaying in my head made me sick to my stomach. I wanted to run, but all I could do was walk away. I wandered the neighborhood, smoking my last cigarettes, crying, and blasting my music as loud as it would go so I could drown out the voices in my head.

I eventually found my way back, numbed out from all emotion. But I still couldn’t eat. I felt like anything I put in my mouth would be judged by people, would be judged by her. It felt like I was under control again. Instead of you can’t eat this, you don’t deserve it, it was now you can’t eat this, you don’t need it.

I get it. I’m not a thin girl. I never was. But why do people feel the need to tell me what food I should or shouldn’t need, and what I should be eating? I’m on a high sodium diet, recommended by not one, not two, but three cardiologists. I also have to consume a considerable amount of protein to keep my creatinine levels normal. I eat a lot of vegetables — they are my “safe” food, the food I can always eat no matter what, and they help increase my vitamin levels, which have been dangerously low in the past.

I may be fat, but I struggle with an eating disorder. And no, it’s not binge-eating disorder. I’ve been doing well in recovery for the last several months. I’ve been eating two to three meals a day. I haven’t purged. I haven’t obsessed over counting every calorie and weighing myself every morning. I haven’t had to fight at any meals because I haven’t refused to eat. Although a combination of my knee injury and my heart medication has led to a substantial increase in weight over the last few months, I wasn’t letting it get to me.

But now the devil is back on my shoulder. My ED brain woke up from its peaceful nap and is now wreaking havoc. I’m struggling to eat. I’ve started counting every calorie. I let myself get this way, and now I need to fix it. I need to not be fat — a goal which logically, I know is unachievable, but emotionally, I believe is the cure for what ails me.

Don’t take this the wrong way…it’s amazing how just a few words can really fuck up your recovery.

I still don’t know — what other way was I supposed to take that?