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.

Pretzels

I don’t have much energy lately.

Not that I ever had a remotely normal amount of energy in the last several years, but I am probably at my lowest energy-wise.

I’m doing my best to not stay in bed all day. I go out, even if it’s just for a few hours. I’ll ride the bus around, sit on a bench somewhere and just people watch, or window shop at the mall. Then I get tired and venture my way back home. I don’t get much done. I’ve barely made a dent in my thesis. I don’t write much anymore. I’m just tired.

Then throw in the added frustration of chronic illness. I can’t even count how many times I’ve had to bite my tongue the last couple of months. People comment on my appearance asking me if I am pregnant, which is especially difficult considering that I was pregnant around this time last year. Then I’ve had other people say outright that I’ve gained a lot of weight, and others suggesting diet plans and even fasting for one week. Completely. Unsolicited. Advice.

Instead of cursing them out like I want to, I just nod or change the subject. I know engaging with them will only ignite my emotions, and I’ve been doing really well keeping them under control, considering everything. But it gets frustrating when it comes up so much.

It’s even more frustrating because I can’t help it. My autonomic dysfunction has spread to my digestive system full force. I had mild problems before, but it has gotten severe over the past few months. I’ve stopped going to the bathroom for weeks at a time. That’s what causes me to look pregnant, because all the weight is in my belly. And I can feel it all there. It’s uncomfortable as fuck. So is the nausea and the reflux and everything that comes along with it.

But it’s not like I can pray for poop, either. Because my digestive system knows no middle ground. It is either paralyzed or on speed and dumping out everything like it’s toxic. I’ve had to wear diapers. This is my life now. I’m thirty-fucking-two.

There’s not many foods I can eat anymore. No dairy. No cheese. No fruits. No meat. No to most veggies. No corn. No chocolate. Nothing high in fiber. Nothing spicy. I’m lucky if I can handle one small meal a day, and it’s usually pretzels. I’m living on pretzels. I’ve been using liquid supplements, but they’re expensive and I can’t keep that up for long.

I see a specialist — a GI doctor with experience in autonomic dysfunction. But it’s not like there is much that can be done aside from what I’ve done already. There’s no medication for this shit, no reset button for my brain. So I’ve just been dealing.

I’m just getting tired of pretzels.

YOLO

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

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

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

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

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

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

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

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

Guard down, guard up

Sometimes, I let my guard down.

Then, I am quickly reminded of why I shouldn’t.

It’s a complicated thing. The fear of trusting anyone, yet the seemingly innate pull to open up to someone. The desire to be alone, yet the need to be in contact with others. The want for a family, even when family has continually been nothing but toxic.

I made a mistake. I should have seen it coming; looking back, I don’t know why I even put myself in that position. But it’s that seemingly continuous push and pull of two opposing wants that seem to lead to these mistakes.

It was the right timing. I was vulnerable. I had just left to go across the county. I left everything and everyone behind. I was disconnected, not only physically, but emotionally as well. And I wanted so much to reconnect to something or to someone.

And I did. I got a friend request on Facebook from a distant cousin — my mother’s niece. Years ago, I would have immediately deleted it. In fact, I may have even had her and others blocked. But over time, I let my guard down. I let my fear dissipate. But, given the circumstances, I felt okay enough to accept her request. After all, I was nowhere near her or my mother physically. After all, this was someone who hadn’t seen me since I was 14 years old. After all, this was someone who my mother avoided having any physical contact with, someone who my mother spoke ill of (along with her sister and others in her own family). So how much of a danger could it have been? I added her.

I soon learned that was a bad decision. In response to my last blog, she posted several comments, all of which focused on how I was loved and cared for, how I chose to leave the home where I was loved and cared for, how my mother loved her children and wouldn’t ever molest them…you get the gist. I did, too, because I heard it before. Almost word-for-word, in fact. Because they were my mother’s words, her defensive speech. We’ve all heard it before.

I was trying not to engage, but I eventually gave in and defended the truth. I reminded her that she was barely in our lives, how the last time she saw me was when I was 14, and that she really couldn’t have had any realistic idea of what was going on. I told her that I could connect her with people who witnessed the reality first hand — not just of the physical environment we lived in, but of my mother’s inappropriate words and actions. I suggested she be open to hearing both sides, as it seemed she was taking my mother’s word for truth without taking any initiative to find out what existed outside of my mother’s words.

But my words to her didn’t get very far, because when I woke up the next morning, her comments were deleted and so was she.

I had a tiny bit of hope that a friendship could have existed before all of this happened, that I could be connected to a part of my family, even if it was just in this small way.

I’m not that hurt over it. I got over it quickly. I think what stuck out to me the most was just how gullible people could be, how easily they could drink my mother’s Kool-aid and believe everything she says just because she says it. I’m fortunate enough that many people didn’t fall for her lies. I just wish that more of those people were family.

I find the timing interesting. Adding me as a friend a week before my freedom anniversary. Waiting until that very moment to let it out. I highly doubt it was all just a coincidence. But it doesn’t even matter. My lesson has been learned.

In her last comment, my cousin talked about how my mother was sick and suffering.

Good. I’m not going to lie. Good.

And that’s even if she is really sick, because I really don’t think anyone is close enough to her to truly know.

But, I will not feel bad about my anger or my grief. She is in her 60s. She got to live. I am 32 and can barely make it a month without a stay in the hospital, dealing with health issues that people my age (or anyone really) shouldn’t have to deal with. I’m not going to feel bad for being angry at her. I’m not going to feel bad for hating her. And I’m not going to feel bad for not caring about her, because she sure as hell never cared about me.

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?

Shelter

I am exhausted. Physically, mentally, and emotionally. Possibly the most exhausted I have ever been.

Social services found me a bed at a homeless shelter today. It’s a temporary shelter — 30 day max stay. It’s on the other side of the county, in an area I don’t really know. But it’s a bed. There wasn’t much else they could do. I don’t qualify for any assistance because I am in the small percentage of people that fall within all the loopholes of disqualifications.

I’m trying to pick up the pieces. I’m trying to catch up with all the school work I got behind in when I was hospitalized. I’m trying to figure out if I’ll ever find a stable place to live. I’m trying to figure out how I’ll pay my bills.

I hadn’t cried until today. I’ve been pretending to be strong, when inside I’ve been a mess. It finally came out when I was sitting at social services and they told me I would be going to a shelter. It finally sunk in that I was homeless and alone.

It’s really hard to see the positive in anything in times of crisis. I could totally see myself having a complete meltdown. I could see myself giving up entirely.

But I have so much support. Friends, some I’ve met and some I’ve only known online, have continued to be supportive throughout these last a several days. Phone calls and emails have helped me get through the day. People have donated money to help me with transportation and food costs. And their messages of hope and gratitude for how I’ve helped them brought me to tears.

To those that have donated and help me in any way, I am incredibly grateful. You have given me hope.

I’ve always been the person who helps everyone. It’s hard for me to be the person in need. It’s hard for me to focus on myself and not caretake for others. When I first came here to the shelter, I donated half of my clothes. Because even in the chaos of my own happenstance, I felt that I had to give back in some way.

I don’t really know what’s going to happen anymore. But all I can do is hope that this experience has some kind of deeper meaning that I just can’t see right now.