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.

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?

Disconnection

It’s difficult. The seemingly simultaneous wish to be alone and with someone at the same time. It doesn’t make sense.

I am lonely. And that’s dangerous. Because I have a tendency to make choices that aren’t always the best.

I miss people back home. It’s been so difficult to maintain relationships with people I no longer see face-to-face. For nearly two years now, I’ve been gone. It was okay in the beginning. Friends still called, still sent texts. A couple of people even traveled to come and see me.

But it’s not like that now. No one calls anymore. No one visits. I barely get text messages, and most of the time, it’s me making the effort to message first. Sometimes I don’t even get an answer. Sometimes I get frustrated by the people who do answer, and I ask myself why I keep reaching out when it only ends in frustration and pain. But I still keep reaching out, because I don’t have anyone else.

It’s just frustrating, because I feel like it’s me that always has to put in the effort. If someone back home wants to see me, it’s expected that I be the one to go up there. I don’t even know where to start on the multiple ways that is difficult for me. It’s a huge risk for me to even be in the vicinity of my mother. Since her veiled death threats, I have never been back. I don’t know what she is capable of, and I don’t know who is still on her side.

Not to mention I don’t even drive. It takes hours just to get there. It costs money I don’t have.

But I still wanted so badly to go back. I wanted to see the people I knew as my friends for so long. I wasn’t thinking about the risks. I just wanted to go. And I was going to go. Until those closest to me reminded me that maybe it wasn’t such a good idea. For one reason, safety. I can’t guarantee that someone won’t see me and immediately contact my mother to tell her I’m in the area. And for another reason, my emotional state. Just being in those familiar places is enough to induce panic, and if something did happen, I’m not sure I am in the best place to handle it. And it’s not fair to the others around me to have to deal with the aftermath that it might bring.

So I told my friend I wouldn’t be able to make it up there. I told him that collectively, we didn’t think it was a good idea. Before I even responded with an explanation, he asked if it was because of my heart. Oh, right. That. An issue that never even crossed my mind. I forget that I’m sick sometimes. It’s been okay because I rarely stray from home. Even when I am alone, I can pass out safely on the carpet and get up and go about my day. And even when I do leave the house, I am with people who know me, who literally catch me before I fall. I won’t have that there. If I passed out in that neighborhood, I’d be lucky if no one stole the shoes off my feet.

But instead of feeling better, his acknowledgement only fueled my anger. You know it’s not safe for me there. You know what my mother sent to me. And you know I’m not really healthy. And yet it’s still on me. I need to make the effort. I need to put all of the work in. I need to make the moves.

I’m tired of putting in all of the effort for people who don’t put in any effort for me. It hurts. I realize that our lives are not the same anymore. I realize that I was the one that moved away. But I had to make that choice to save myself.

I’m not asking for much. A birthday card, a Christmas card, a visit once or twice a year. Something. But I end up with nothing. Nothing but disappointment. Nothing but complete disconnection. Nothing but anger when I see the times that people are just a short drive away from me, and yet they never visit.

It’s isolating. It feels like I am the one who’s done wrong.

But I can’t give these relationships up. I can’t tell my friend I can’t go through with all of it anymore. I can’t make that last severance with my remaining family. I just can’t do it. But I am the one that suffers. I’m the one that constantly gets hurt. I am the one that still feels disconnected.

I wish I could say I can move on. In my mind, I know these relationships aren’t what they used to be. They aren’t good anymore. But my heart doesn’t get that message. My heart longs for the connection we used to have, the connection that just doesn’t exist anymore, and likely never will.

I know I can replace friendships in my new life here. I made friends at work, but now that I’m gone it’s not the same anymore. I acknowledge the awkwardness of the situation,  that it probably pushes them away more than it would in normal circumstances. It sucks, but I had to choose a place to live and a safer life over the job I loved, which also happened to be the only place where I fit in.

I’m not like other people my age. I have trouble relating to them. I’m not a parent, I’m not married, and I don’t have a career. I don’t go out. I don’t like most things. I avoid most women like the plague because I am scared of them.

I’m also a 31 year-old with the body of a senior citizen and the soul of a child. It’s hard to meet people who understand that, and who accept that is who I am and who I will be.

I know I have people here that care about me. I know I can connect with them. But it’s still not the same. I still miss those pieces of my old life. I still miss my family. Those are people who can’t be replaced.

This is not my family.

I still remember what my mother wrote to me

You made your decision to disown your family.

It wasn’t a decision to disown my family. It was a decision to save my life.

And I am reminded of that decision every day.

I left a life behind. A life I can never go back to. A life full of people I can’t see anymore.

One of my best friends graduated from college last week. I wanted to be there to support him, in the same way he was there to support me when I graduated college last year. But I couldn’t. I could only experience his moment through pictures he posted on social media. Because I can never go back to that place again. I can never take the risk of my mother seeing me, of finding me, of hurting me. I can never return to the only place I knew for 29 years of my life, my home, my friends, my family. And that hurts in a way I’m not sure I can ever explain in words.

For all those months after my escape, I went through my hardest moments alone. I spent holidays alone. I stayed in the hospital alone. I struggled to explain to every person taking down my information that I had no emergency contact, no next of kin, no person to notify. No mother? No father? No siblings? No one? They could never seem to understand how I had no family. Didn’t they hear? I disowned my family.

And now here I am, smack dab in the middle of a family that is not my own. I’m going through shit with people by my side from a family that is not my own. I am spending time with people from a family that is not my own. I am living in a house that is not my home.

Now it’s different. I went to the cardiologist appointment with someone by my side, someone who cared enough to take the time to come with me, because she knew I wasn’t going to speak up for myself. But she doesn’t know I don’t speak up for a reason. She doesn’t understand I’ve been trained not to speak up for myself.

I went through my surgery with her by my side. As the cardiologist stitched up my incision, she said “I’m going to go out and tell your mother how everything went.” In that moment I realized that’s who should be here: my mother, my family. Instead here was this woman, of no relation to me, standing by me through a hard time. She isn’t my mother, but she cares and supports me more than my biological mother ever did, strong enough that even my doctor mistook her for my own family member.

I always dreamed of having a real family, but I never knew what it looked like. I didn’t really imagine other people, I just imagined my parents being different. I imagined living a life with a mother who didn’t rape and abuse, and a father who hugged instead of hit. I imagined going out places instead of being stuck inside of that prison. I imagined that they would change, but they never did.

Thirty-one years later, I found that family. A normal family where I don’t have to be afraid to go to bed at night and I can eat food without being punished for it and I can go outside and see the world whenever I want. I found a family with a man who asks if I’ve done my homework every Friday, because he knows I have a paper due that night. I found a family with a teenager that asks where I’m going each time there’s a stranger parked outside the house waiting to pick me up for a date. I found a family with a kid I can joke around with so much, we both end up rolling on the floor. I found a family with a woman who tells me goodnight and gives me a hug before she goes to sleep. I found a family that makes sure I’m eating enough, a family that always makes sure I have what I need.

It’s a normal family. It’s a family I never experienced. And it’s not my family. Because I’m not sure I fit into a normal family. I am not sure it’s fair for them to have to deal with me. It’s not fair for them to have to make sure I am eating like a normal person. It’s not fair for them to have to hold my head off the floor every time I pass out. It’s not fair for them to care for me, when I can barely find it within me to care about myself. I am a burden. And they did nothing to deserve that.

As much as I’m included in everything they do, I still feel like an outsider. I feel like someone who doesn’t belong. Because I don’t belong. This is not my family. I am alone. In the middle of a room full of people, as crazy as some of them may be, I am the only one that doesn’t belong.

It’s ironic. My own family treated me like the outsider my whole life. Yet the truth is I never belonged with them anyway, because I was nothing like them. And now, with a family who is treating me like I belong, I find myself pushing away.

I ended up crying in the corner of the living room yesterday. The family had a barbecue. Other family members were there. And for a few hours I felt okay. I talked, I listened, I even got dragged into a mini-trip with a woman who had just learned my name. And then right before dinner, something clicked in me. This is not my family. I do not belong here. It hit me like a ton of bricks.

They sat down together in the kitchen and I isolated myself in the corner of another room. I knew I was going to cry. I tried so hard to hold in the tears. I tried to look at my phone, act busy, but then she came over to ask if I was okay and I just knew I wouldn’t be able to hold the tears in anymore.

She asked if it was my heart. I knew she meant my arrhythmia, so I said no. But my heart was broken in a different way, a way that I can barely explain. A broken heart that continues to break each time I realize all that I never had.

She knew something was wrong and kept asking me what it was, and I kept trying to hold it all in. I’m fine. I finally broke down and told her, this isn’t my family, this is yours. I couldn’t hold in the tears anymore. She grabbed tissues and tried to comfort me, while blocking me from everyone else in the other room. She told me that I was family, that she adopted me, that I belong. She had told me it all before, but it still didn’t feel right.

I got what I always dreamed of as a little girl. Love, care, support, safety, and all of the things a real family should be. Yet even though I am the safest, happiest, and most balanced I have ever been, I am still reminded of what I don’t have: my family. They are gone forever. Some dead, some gone away, some too dangerous to recognize they exist, but regardless, still gone. I am one standing, both disowned by my family and disowned to them.

This is not my family. I don’t want to be a burden to them.

I don’t understand how I got here.

Loneliness

I’ve been crying a lot this past week.

It’s hard for me. I’m someone who needs to prepare just to go to a routine doctor’s appointment. And now I’ve been faced with regular appointments and hospitals and tests. It drains me.

It’s been a waiting game these last few days. I went to the hospital Thursday for my CT scan and ultrasound. For two and a half hours, I pushed my anxiety down far enough to get through each test. I didn’t mind the CT scan. I couldn’t see what was happening — not knowing in the moment was comforting.

The ultrasound was another story. I could hear the sound from the blood rushing through my arteries. I could see the red colors flashing across the screen. Red was good. Sound was good. It meant that the blood was flowing. But then as the tech went further up the left side of my neck, the sound dissipated. The loud rush turned into the lightest whisper of sound. The red color flashes were blocked by blackness. Something didn’t feel right, but no one could tell me anything. You have to call your doctor.

I managed to make it out of the hospital with a brave face. My therapist had me commit to calling a support person after the appointment, and I’ve only been able to trust a few people there closely enough to reach out to them. I walked over to the coffee shop and called the nurse. She didn’t answer, so I left a voicemail. I’m not even sure entirely what I said, but I know I started out with “I’m sorry” and ended in my usual “I’m okay”.

She called me back ten minutes later, and I hesitated to answer. I did answer, but as soon as she asked me how I was, I started to cry. I was scared. She asked me to tell her what happened but I could barely make sense. I remember her saying you can’t change it now, it’s done, you can’t change anything.

I wanted to change everything. I wanted to rewind my life to a point where I never had to feel pain or know sadness, or sense fear, a point in my life when I had no problems. But that point has never existed.

I went to work later that day and ended up crying again. My boss asked me how the appointment went and I just cried. I don’t understand. I don’t have high cholesterol, I don’t have high blood pressure, I don’t eat junk. Why is this happening to me? I don’t understand. I’m scared, and I don’t understand.

In that moment, she comforted me. She said it was okay to be scared. She said she’d be scared, too. She wanted to be there for me, through the surgery, through whatever I needed. She told me to call her this weekend just to talk if I needed.

But I never called her. Even in the moments that I found myself overwhelmed with fear, sadness, and loneliness, I couldn’t pick up the phone and call her. Why? This woman was genuine in her offers of support. This wasn’t the first time she has been there for me. She took me in on Christmas when I had nowhere to go and no family. She made me a part of hers. But when everyone gathered together to take the family photo that night, I sat out. I’m not part of this family. I felt like an intruder. A welcome intruder, but an intruder none the less.

And I still feel that way. I can’t call her because I’m intruding. I’m bothering. I’m being a burden. It’s a barrier I still can’t seem to break down. She has her own family. All of these people I know have their own families. And I am not part of that. Even the people at PHP keep telling me they are there to support me, but I can’t do it. They have other things to do, other people to support. I don’t matter. I am KJ, party of one.

The hardest part of all of this hasn’t been the appointments or hospital visits or the anxious wait for answers. It’s the loneliness that exists through it all. It’s going to appointments alone. It’s sitting waiting rooms alone, looking around and seeing others with their spouses or older children or friends. It’s laying in a hospital bed and staring at the empty chairs beside it. It’s the uncomfortable silence that occurs every time someone asks for an emergency contact. There is no one. No spouse, no children, no parents, no siblings. I am alone.

It’s times like these that remind me how alone I am. I should have my family by my side at my appointments. I should have a mother to hug me when I’m shaking in my bed at night because I am so afraid of what else could be wrong with me. I should have my father’s shoulder to cry on. But none of that exists, and it never will.

I cry alone. I shake alone. I worry alone. I bear the pain alone because I’m so afraid to share my burden with anyone else.

My tears are not from sadness. My tears are from loneliness.

I don’t want them to drown me.

Family

I was waiting outside at the bus stop earlier today when I saw my cousin walk by. My gut reaction was to scream out and run to her. Hey! Remember me? I’m your family!  But then I remembered her direct connection to my mother, and I started to panic and hide away.

I’m not even sure why I felt the need to hide. My cousin hasn’t seen me since I was a child, at least 15 years ago. She hasn’t changed much at all; I, on the other hand, look nothing like I did as a child. My eyes are the same, but that’s about it. She would have never recognized me. I probably would have scared her, shouting her name across the parking lot. I was a stranger to her.

As I sat there, processing the hurricane of emotions I just had in that short moment, the realization started to sink in again. I have no family. I felt the emptiness in my heart, and I started to cry. At the bus stop. With people around. Great.

I know that disconnecting from my family was the safest thing I could have ever done. I ran away from my parents, and in doing that, I also ran away from the rest of my family. I can’t risk my life connecting with anyone who is still connecting with my mother. As badly as I want to feel that family connection, I have to realize and absorb that is no longer possible.

What little family I did have left, I have had to disconnect from. Even though they were technically safe and disconnected from my mother, they were not emotionally safe for me. After enough repeated heartbreak and longing for love and support that was just met with frustration and hurt, I had to cut them away.

Now, I literally have no family. I am still grieving that loss. The wound is still fresh. It’s so hard, because no matter how many friends I have, they are not my family. I need family. I’m not sure what’s so wrong with me that I could never get that.

Disconnected

I realized yesterday that I have been so disconnected from the outside world. I don’t read the newspaper. I don’t watch TV anymore, so I never watch the news. I rarely go on my computer, so I miss most news stories that tend to pop up when you’re surfing the web. Don’t ask me about politics; I have no clue what’s going on aside from Donald Trump running for president. Don’t ask me about popular crime stories; I haven’t heard them. The one thing I may know about is the weather, and my knowledge is limited to whatever the app on my phone provides me.  Which, by the way, isn’t much, since yesterday a friend mentioned a hurricane coming and I had no clue about it.

I realized that, while some disconnection is okay, I feel like I’ve cut myself off from the world too severely. I used to take pride in knowing everything about what was going on in the world, whether it be politics, economic affairs, ethical issues, et cetera. I watched the news every day. I spent hours online reading articles about whatever sparked my interest. Now I’ve become the total opposite.

I did a little self-reflecting to figure out why I’ve become so cut off. I know why I avoid watching television. It was something I did with my father for the last few years, since he was too sick to do much of anything else. We would watch all kinds of shows, even “trashy” reality TV. I admit, I am using the term watch loosely. I was mostly listening to the TV as I typed a paper up for school on my laptop and obsessively checked my Facebook newsfeed waiting for something exciting to come up. Regardless, watching TV reminds me of my father, and I just don’t want to be reminded of him right now.

I’m not sure why I’ve become so disconnected with reading the news. I wonder if part of it is just being so mentally exhausted from my own life, that I have little energy left to expend on anyone else’s. Maybe my mind doesn’t want to focus on anything else right now. Maybe I’m afraid I’m going to come across something that will remind me of home or my family. I don’t know.

But connecting with the outside world could also provide an escape. I won’t have to focus on me all of the time. I could think about other things. I’d be able to interact with people and talk about things without having to pretend I know what they’re talking about. I can feel connected to something again, something that isn’t going to put me in danger.

I did something last night that I hadn’t done since I first moved here. Part of it was prompted by my earlier blog post, and part of it was because my house was so numbingly cold. But I made myself a bowl of spicy green and wax beans (one of my comfort foods) and went outside on my back porch. It was too cloudy to see any stars, but I could still breathe in the air, and I could still hear the crickets chirping. So I took it all in. I sat on my stairs and ate my beans and for a brief moment, nothing bothered me. Then the police came for a domestic dispute across the street, a mother starting yelling at her kids to stay on the sidewalk, and my sense of tranquility disappeared.  Even so, I realized that peace doesn’t come without a little disruption sometimes.

Perhaps I will try to do this again. It helps me connect with myself. It helps me to connect with the outside, even if the outside consists of the area around my back porch. It helps me not feel so alone in the world.