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.

When Reality Hits

For as long as I’ve spent in therapy (thousands of hours at this point), I can count on my fingers the number of difficult sessions I’ve had.

It’s not that my sessions don’t involve difficult topics. While most of my early therapy experiences focused on tackling surface issues unrelated to trauma, the last nearly three years have been all about my trauma. Even then, I found myself able to detach from emotions a lot of the time.

Just a week before this latest session, I told my therapist about an incident from my teenage years. I was triggered a few days prior when the dog had split her nail and bled on the carpet. It almost instantaneously led to a flashback from when I was stabbed in the abdomen and left the same marks. When it happened, I was lost in all the same emotions. I felt like it was happening all over again. But when I told my therapist about it, I was void of emotion. I didn’t cry. I didn’t feel anything.

I thought I could do the same thing in our next session. Don’t cry. Don’t feel. Just get it all over with. Instead I cried, and I felt more than I ever wanted to feel. I was unprepared for that.

My therapist was concerned. And I knew it wasn’t just her concern. It was the treatment team’s concern. And as much I tried to deny it, it was my concern, too. My symptoms were getting worse. Not only in the last week, but in the last few months. I had been getting increasingly lethargic. No matter how well I sleep, I’m exhausted. Some days, I can barely climb the stairs without feeling like my heart is going to explode. My legs and feet swell, the right side worse than the left. Some days, it feels like I’m dragging 100-pound weights on each leg. Just moving around puts my heart into overdrive. Several times I found myself leaving group because of chest pains.

It was other things, too. Signs of heart failure. I knew it all too well. I watched my father go through it. I didn’t want to watch myself go through it.

I couldn’t avoid it any longer. If you don’t make an appointment with your cardiologist by tomorrow morning, you cannot return to program. An ultimatum with no option for negotiation. A crisis I could no longer avoid.

This session was different. My therapist wasn’t softening reality at all. She wasn’t letting me get away with avoiding the pertinent shit in my life. Not this time.

You know what, yes, you likely do have heart failure. Not going to the doctor isn’t going to change that. She was right. But there’s a difference to me, in suspecting something to be true and then actually having it confirmed. The latter is unchangeable. At least with not knowing for sure, there is just enough room for a small possibility of change, a small chance of it not being true.

Yes, you’re going to be sick for the rest of your life. And I will never understand how that feels, how you feel. It’s frustrating. It makes me angry, for many reasons. I’ll never know what it’s like to feel normal, to not be sick, for just one day. But my mother knows that. She’s not suffering. She’s living longer than I will likely live, more healthy than I have ever been and will ever be. Where is the fairness in that? I lost the genetic lottery big time.

But it can be treated. Yes. Just like my emphysema is treated. Treated, but not cured. Another diagnosis to be added to the list. Another health issue I didn’t need in my 30s. Another illness I don’t deserve.

Is it just about not wanting the diagnosis, or is it more than that? Is it another indirect way to be suicidal? It’s like she knows me. The same reasons why I still smoke with emphysema. It kills me faster, and no one really sees it as a slow suicide; they just see it as being stupid. The longer my heart goes untreated, the sooner I’ll die. Why prolong a life that’s destined to be minimal?

I didn’t tell her that, of course. I told her it was just about the diagnosis. I thought that would put a stop to the difficult conversation, but she just shifted to something even more difficult: the purpose of my life.

You may very well never be able to work again. You may not be able to get through all the schooling you want to. She was direct, in a way she had never been before. We’ve always thrown around the idea that I could eventually start working again, that my heart condition would get better and I could be normal again. But that didn’t seem like a realistic option anymore, at least not in the sense that I wanted to be normal. As far as school goes, I missed the deadline for my doctorate application because I was inpatient when the application was due. So any plans I had for getting my doctorate next year went out the window. And maybe that was meant to be, since I can barely get through the last few courses I have for my masters. Not for lack of knowledge, but for lack of energy.

But maybe you were meant for something different. Maybe you can’t be a therapist, or go into research. But maybe you can help others in a different way. She read the letter I wrote to the hospital. Another example of my never-ending drive to correct wrongs. I told her about the director’s response, how they were going to look into how they can change. See, think about the people you’ve helped just by doing this. You may likely cause this hospital system to change their ways.

I knew she was right, but it still didn’t seem like enough. I needed more. Maybe you can start an organization. I told her I already did. I told her what my dream was for PAFPAC, what I wanted to do when I first started it. But then my health (mental and physical) took a turn and I haven’t had the energy to make it what I wanted it to be. You’re still helping people.

But not as many as I wanted. I admitted to her that my life goal was an impossible one, and that’s where I’ve gone wrong. I wanted to stop mothers from abusing their children; I wanted to prevent people from hurting. And I know, logically, that will never happen.

You can still affect change. You’ve already started. Your actions help people. Your writing helps people. You give a voice to those who can’t speak. You’re going to have really bad days. That’s inevitable. But some days, some days are going to be okay. And it’s those days that you can really be you.

The dreams I had when I first ran away are now gone. My hopes of being a professional, of living a long life, of helping the world, are just not possible. The universe has given me this life of constant struggles. It has taken away too much from me. I’m just not sure if what I am left with is enough for me.

Purposeless

Stability outside, chaos inside. That is what my life is right now. And saying stability outside may even be a bit of a stretch. But I guess for those who don’t really know me (and even some who do), I appear stable.

I’m not at all stable. I barely know what day of the week it is anymore. I haven’t paid any of my bills this month. I don’t even know why. It’s not like I have a legitimate excuse. I’m not even working. I’m just existing.

I am useless, and not for lack of trying. I tried to get my regular doctor to write a note for me to return to work. Bad idea. It took an hour for me to even get her to consider writing me a prescription for an antiobiotic. An antibiotic. Not a narcotic. I’m just asking for some penicillin, because I clearly have an infection in my lungs that was not going away with steroids alone. And she even agreed. That’s the best part. She knew I needed medication, but told me in fancier words that I was too complicated to treat, between the COPD and my heart condition. I was lucky I got a Z-Pak; getting a note would have clearly just been too much.

So I told myself I’d wait. Just another week, and I can see my cardiologist and she’ll write me that note, she’ll clear me for work. And then I get a call four days before my appointment, with a voicemail that said my cardiologist has resigned and my appointment has been cancelled. The woman on the phone said it like it was no big deal. Even added in theĀ have a nice day. This cardiologist performed my surgery. My cardiac monitor is subscribed to her name. She was a specialist. She was the first one to legitimize my concerns. What in the fuck am I supposed to do now?

I called the office back. I told them I was out of work. I told them I had been in the hospital several times since my surgery and needed to be seen. She told me I could see my old cardiologist, the one that always assumed my heart issues were really just the aftereffects of cocaine abuse and a possible seizure disorder, completely dismissive of anything cardiac despite everyone else telling me my heart is not beating right. Fine. I have no other choice. I’ll take him.

Great. Now let’s get an appointment. Well, he doesn’t have any openings until next month. Are you fucking kidding me? My surgery was in May and I haven’t even had a post-op appointment yet. I have stitches hanging out of my chest that I have tried my hardest not to pull out myself. I am out of work because, understandably, who the fuck wants to be liable for someone working who passes out consistently. But let’s just give it another month. Fine. Because I really have no other choice.

It’s frustrating. I want to scream and cry, but instead all I do is bury it down and put on a smile. I’m good at that. Hide the anger, hide the pain. I hide my tears, too, until I can’t hold them in anymore. Then I run. Out of the house. A few blocks away. And I sit on a bench and cry. And I smoke a cigarette until the pain goes away. I tell myself I’ll smoke just one more, and then it’ll all be fine. That’s what I’ve done my whole life. Just one more line, just one more drink, just one more pill. But it’s never fine. It’s not now, and it never was in the past. Yet I still keep trying. It’s how I ended up on a bench in the middle of a thunderstorm, soaking wet, with an empty pack of cigarettes, wondering why I couldn’t breathe.

I am a mess. Not wanting to die, but not caring if I exist. Because I feel purposeless.

People tell me my intelligence, my grad school work gives me purpose, but it doesn’t to me. I just finished a year of graduate school and maintained a 4.0 GPA, but it just doesn’t matter to me. I didn’t put forth any effort. I didn’t study. Hell, I took my last final drunk and started and finished my final project in the hour before it was due, and I still managed to pull 100s. That is not effort. That is not purpose. That just is.

My intelligence does not give me purpose. If anything, it only causes me more pain. Knowledge hurts. Because I know how to fix the damage in others, yet I can’t seem to fix the brokenness within myself. If I didn’t know any better, it wouldn’t bother me as much. I’d just be broken.

How can I plan for a future when I don’t even know what’s happening now? There are things I’ve accepted. I won’t have a family. I won’t live as long as planned. I am sick, and I will be sick for the rest of my life. But how can I plan around that?

I dreamed of being a therapist because I wanted to help people in ways I wished people helped me, I wanted to make a difference. But that dream isn’t realistic now. I can’t be a therapist with DID. I know they exist, but they have to exist in hiding. Because the world will never accept them.

I don’t know how to make a difference outside of that. I can’t stop every child abuser. I can’t make people understand that mothers abuse their children, too. I can’t get people to open their eyes to truths they don’t want to see. So what is my purpose?

Beyond housework, I am nothing right now. I keep busy as much as I can. I wash the dishes. I do the laundry. I sweep the floors, vacuum the rug, take care of the dogs. But in the moments where there’s no more laundry, there’s nothing left to clean, and the dogs are asleep…those are the moments that scare me. Those are the moments I hear my mother’s voice, telling me I am nothing, that I am a burden.

Those are the moments I sit and realize that I am purposeless.

I’m a Liability

Do you understand the consequences of your condition? You cannot be out by yourself. Do you understand? You can be walking down the street, pass out, get hit by a bus, and die. You can pass out and stop breathing, and the lack of oxygen will cause you to be brain-dead. This is serious. I need you to verify that you understand the risk you’re taking.

I laid in my hospital bed, listening as the doctor in charge continued on her lecture. I laughed to myself. There were so many things I wanted to say, half in sarcasm, half in truth, but I knew saying them out loud would likely end up with me being put on a psych hold. I repeated her words back to her. My voice lacked the care and concern that hers did. This wasn’t anything new for me. This was my normal.

I didn’t wake up that Tuesday morning expecting to end up in a hospital bed later that night. It was a regular day. I woke up, took a shower, unloaded the dishwasher, and put a load of laundry on before heading to work. It was a slow day to start. I walked home on my lunch break to let the dogs out and take some cough medicine, as I hadn’t been feeling well since the night before. I walked back to work and planned to finish out the next couple of hours with no problems.

But it didn’t quite happen that way. I knew something wasn’t right. I was walking down the aisle and I could feel my heart racing and stopping, racing and stopping. I kept telling myself in my head please, not here. I was barely two weeks into the job. I didn’t want to pass out there. I hadn’t even informed anyone of my heart condition until a week after I started the job, and it was only because my therapist thought it was necessary. None of my coworkers knew; only the manager. I didn’t want anyone to know because I didn’t want people to overreact. I didn’t want anyone to treat me differently. I just wanted to be normal.

Time had passed and I could still sense something was wrong. I couldn’t breathe. At one point, I could barely speak. I motioned to the assistant to take care of a customer for me, and I must have looked off because she ran to get me a chair. I just wanted to be okay. This is going to pass. This needs to pass. I sat down, hoping that would help. I tried to breathe, which was harder than normal because I had also been sick.

I don’t know how long I was sitting for, but I ended up falling over onto the floor. I looked up to find my coworker kneeling at my side, another was on the phone with 911. I’m okay, I just need a minute. Why did they have to call 911? I don’t need help. I’m fine.

But people still don’t believe me when I say I’m fine. The paramedics ended up taking me to the nearest hospital. I gave them my history, told them I had the internal heart monitor. They couldn’t get any information from the monitor because I didn’t have my ID card on me, and it wasn’t the same hospital where my surgery was done. So all they could do was run tests.

EKG was normal, x-ray showed an enlarged heart with inflammation in the lungs. They started me on IV steroids and breathing treatments. I thought the focus had shifted from passing out to not being able to breathe. After a couple of hours, the heart monitor was off and the breathing treatments stopped. A doctor came in to tell me I had been admitted, and I immediately starting panicking. Why? All I’m doing is sitting up in bed, unattached to anything but a Pulsox on my finger.

You passed out. Well yea, I pass out a lot. I still wore the bruise on my forehead from two days earlier, when I passed out and hit my head on the tiles of my bathroom floor. This was just my life now. Pass out, get up, move on. I’ve been doing it for years now, though not nearly as frequently as the last few months. It became just another part of my life to cope with.

I didn’t want to be admitted so they could watch me all night. I could do that myself, at home, free from the PTSD reactions that hospital admissions continue to cause me. I called J in tears, begging her to come pick me up. She knows I don’t like hospitals, but also knows that sometimes I have to be there. And I know that, too. But this wasn’t necessary. I didn’t need to stop my life just so they could make sure I didn’t pass out again.

So that’s why I got that lecture. I told them I did not want to be there. I told them it was difficult for me emotionally. I wanted J to be there to help me make sure I was making the right decision, because I admit I’m not so good at that most times. But she agreed, too. They weren’t doing anything to help me. She told them the same thing I had told them — this is what we’ve been dealing with for months now, and we just deal with it until we know more.

I signed the paper and I left. The risks weren’t new to me. They were the risks I had been taking every day. And I would continue to take them.

Except that not everyone wants to take those risks with you. The next morning, my manager sent me a text. She had already taken me off the schedule for the rest of the week and next. She asked me to turn in my keys. I needed a note before I could return back to work. A note I knew I wasn’t going to be able to get. I was now a liability.

I get it. They can’t have employees passing out. It was a fear I had myself, knowing that there were times I was going to be alone in the store. I get the liability.

But now I am stuck. No one wants to employ anyone who’s going to pass out at random. My disability was denied. I’m not making any money. I’ve spent the last week in and out of hospitals not just because I passed out that one time, but because my COPD is so out of control, in combination with my messed up heart, that no doctor wants to treat me.

I went to urgent care on Thursday hoping to get a prescription for steroids before my breathing went to absolute shit, and I ended up being sent to the hospital again. He told me he didn’t feel comfortable treating me. It wasn’t just the breathing. It was my heart. My heart rate was low — way too low for normal, and especially low considering it should have been higher to compensate for the extra work it needed to do to help me breathe. Something wasn’t right, and as soon as he heard I had a heart condition, I became a liability.

I feel stuck in a situation with no happy ending. No matter what I do, I am a liability.

After all, I can walk down the street, get hit by a bus, and die, right?

But so can anybody. So why do I have to be treated so differently?

 

 

Changes, Part 3

The last of my major changes is in my career.

Last Friday was my last day at work. I am currently, aside from my writing gig, unemployed.

I realize that may seem like a bad decision to some, considering my financial situation is quite dire.

But I had to make a decision between working at a job I love and living somewhere safe. I ended up choosing the later.

It was not an easy decision in the least. I got that job just weeks after running away. My coworkers were the first people I really interacted with, the first (and in many ways, only, for a while) people I got to know. They became more than just fellow employees and coworkers. They became my family, and that is something they reminded me of quite often.

I believe I was meant to be there. I believe I got that job for a reason, among all of the other jobs out there, the other offers I had, I somehow ended up with a group of the most accepting, hilarious, and caring people I could have encountered. That job was my escape from the chaos I was living in. That job was my social life. It was more than a job to me. But I knew I had to leave it.

It wasn’t just one thing. I realized months ago that I was becoming less and less able to do my work. I was physically and mentally exhausted. I got the work I needed to get done, done, but it was taking a toll on me. I had no energy, And as my health started deteriorating, it only got worse. I ended up using a wheelchair at times because I was too weak or too dizzy to walk around. There were many times I had to hide in the bathroom or in the corner of the backroom because I was in too much pain to keep walking.

I knew eventually I was going to have to make a change. It just came a little quicker than I thought.

When everything happened with my living situation, I had to make that choice between my job and a home. With everything else that had already been happening with work, and the consistent chaos that seemed to follow every living situation I got into, I made the decision to leave my job and take the safe living option.

As I said, it was not an easy decision. I cried in the days leading up to my final day, and I cried even more as I hugged my coworkers before I left that last day of work.

I jumped to the conclusion that by leaving my job, I was also leaving the people in it. But I then realized that I was leaving the job, not the people there. These people will still be in my life. I can still talk to them. I can still visit. That part of my life is not gone, it’s just different.

I considered getting another job. I actually interviewed and got accepted for a full-time position. But then I realized I would only be putting myself in an unhealthy situation. I was (at that time, and still) ending up in the hospital every few days, still passing out at random. It didn’t feel right to start a job and put them at risk, so I backed out.

For now, I am taking a break. I am focusing on school and on my writing. I’m resting for the first time since I was a teenager. And most importantly, I am focusing on me and my health, following up with doctors, and trying to get to the bottom of what is wrong with my heart.

In the end, I guess it was a good decision. The hardest ones usually are.

 

Crash

I feel it coming.

That moment when the last string holding shit together finally breaks and everything comes spilling out. That moment when the last screw in the last hinge comes loose and the door flies right off the wall. That moment when everything comes crashing down because the weight is just too much to handle.

I am tired. Physically and emotionally spent. But I can’t even sleep anymore, between the noise in my head and the noise right outside my door. Every ring of the doorbell, every knock at the door, every 3 AM TV show played on volume 50, every fucking noise in the middle of the night — I hear it. And I can’t sleep.

And it drains me. At a time when my body needs the most rest, I am getting the least. The least sleep. The least food. The least of everything. I am running on fumes, and I’m waiting for the day when I finally run out of gas and drop to the floor.

I thought about going to the hospital, which is ironic considering I just fought my way out of there two weeks ago when I was sick. But there are things there that I can’t get right now: a safe place to sleep, three meals a day, quiet, and care. I need those things, right now more than ever.

But I can’t do that. I can’t just drop everything and pretend like my needs matter. The world doesn’t work like that. If I went to the hospital, I wouldn’t be able to go to work, and right now I can’t even afford a tissue to sneeze in. So what choice do I have? No matter what I do, I’m fucked in one way or another.

I try to get care in wherever I can. I stay at work just so I can have some peace and quiet. I sleep there, too. I feed myself off of unwanted food and value menu items I buy with the gift cards I got for Christmas. I use another gift card to go to the movies to give myself a break from my life for a little while. I don’t think my coworkers and friends will ever know how much their gifts have helped me get through these last couple weeks. They have indirectly been my source of care, of peace and sustenance.

This isn’t a way to live. I can’t do it anymore. I shouldn’t have to live like this. I shouldn’t have to sleep at work. I shouldn’t have to look for peace and solace in places that aren’t my home. I shouldn’t have to feel trapped inside my own room.

But don’t worry about me. I’m fine. I still get out of bed. I still go to work in the morning. I am still breathing.

Is that enough?

It’s time to reassess

It’s been a hectic two weeks. I have a lot of decision-making to do in a short amount of time.

I’m not feeling well. I’ve been working all week, which is good for distraction, but bad for leaving me any extra energy to apply to my life outside of work. Pain is also draining me, and I cannot get an appointment to get cortisone injections earlier than the middle of June. By then, I may just amputate my own feet (I’m kidding – I don’t have the energy for self-amputation).

Recently, my abilities were questioned. Now I have to deal with more shit on top of the shit I already manage on a daily basis to fight for something I shouldn’t have to fight for. It’s not that I can’t manage more shit; I feel I shouldn’t have to. I have never given anyone any reason to doubt me, or any reason to question my ability to do anything. I have never and will never put anyone in harm’s way.

Regardless, I am now questioning my life’s path. Maybe I am not where I am supposed to be. I have sort of, unfortunately, lost the motivation to continue where I am at. Part of me wants to stay so I can prove to these people that I can do anything I want to do, but part of me doesn’t want to be around people that feel the need to bring other people down.

I’ve been looking at other educational options. Perhaps entering a new program at a different school. Perhaps pursuing a doctorate instead of a masters. I’m not questioning my pursuit of psychology and counseling. That will never change. It is actually something I will need in order to be taken seriously, especially as I continue to grow PAFPAC. I want to be a counselor. I have had so many shitty experiences with counselors and I know that something needs to change. There are cracks in the system that need to be fixed. And I believe I can do that.

There’s just so much to consider. I wish I was more financially comfortable so I could take time to consider everything. I considered asking my grandmother for a loan – that is how desperate I’ve become. My grandmother seems oblivious to everything (as you can read here) and I’d be putting myself at risk of interacting with my abusers if she tells them about the whole thing. I’m still considering it, I just don’t know either way at this point.

I wish I could work more jobs, but it’s physically impossible at this time. I fear I will need surgery again to repair the damage in my foot. I never had the surgery I was supposed to have last summer because that was the time I ran away, and my feet are significantly worse now than they were back then. If surgery happens, I’m really screwed. I can’t afford to be out of work. Hell, I can’t even afford to be working.

It sucks right now. Everything just sucks. But I keep on keepin’ on.