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?

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.

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?

 

 

31 Going on 70

I celebrated my birthday last week. My 31st.

In many ways, it was nice for me.

My friend at work brought in an ice cream cake for me the day before my birthday, and we all ate ice cream at 10 o’clock in the morning (because the morning is our afternoon). It really brightened my day, even though it was such a short amount of time, it meant a lot to be around people I care for, and that care for me.

When I went to my PHP program on Monday, one of the women gave me a bag of fancy dark chocolate caramels. Most of the people in program know me for two things: my love of dinosaur chicken nuggets and my affinity for chocolate. Since I stopped smoking a few weeks ago, I replaced my cigarettes with Hershey’s chocolates, willingly provided by the director of the program. It was so nice (and a little embarrassing) to be recognized for my chocolate addiction, and I was so surprised that someone would think to do that for me. My face must have lit up, because people commented that they had never seen me that happy before.

It’s the small things that really get me. It’s weird, because in some ways, I don’t want to be recognized, acknowledged, or even noticed on my birthday. But in other ways, I just wish I could enjoy a day that so many other people get to enjoy. I realize a lot of my issues are tied up in trauma. There’s also the fact that my friend died on my birthday 11 years ago, and it feels wrong to celebrate anything happy on the anniversary of his death.

But I made it through. I took it all in. I didn’t break down. I kept myself busy between program and work, and that was probably for the better. Silence and being unoccupied are usually what lead me down the black hole.

Then life happened. The birthday fun was over and I found myself sitting in the ER two days later in excruciating pain. My knee gave out and I fell. Hard. I just wanted to make sure nothing was broken, as I am the girl who broke her foot walking across the street. I thought I was making a wise decision going to the hospital that night. The doctor came to see me, asked me about my history, and sent me for x-rays. Nothing unexpected.

And then the doctor came in with an odd look on her face. I couldn’t tell if she was perplexed or concerned (or maybe both). She asked if I was sure I hadn’t been in pain before this. I told her no, but that answer wasn’t exactly the truth. How can I explain that I learned to block out pain? How can I explain that I learned to deal with pain in order to survive? How can I explain that I learned to believe that pain was my normal? I couldn’t. So I told her no, because the truth seemed too impossible to explain.

I’ve never seen this degree of damage in someone your age. You have severe arthritic damage to your knee. I’m referring you to a orthopedic specialist for more testing and treatment.

I…just went there because I fell. I didn’t break anything, so I guess that was good. It’s most likely a sprain, possibly a ligament issue, but the doctor wasn’t even concerned about that. She was concerned about the old damage. I’ve never seen this degree of damage in someone your age. Those words stuck with me, because they’re words I’ve heard before. I didn’t need to hear those words again. I didn’t want to hear those words ever again.

In all the ways I am trying to improve my mental health, my physical health is deteriorating. I was just starting to cope with the emphysema, another thing they don’t see “in someone your age.” It took an entire year to get to a point of really acknowledging it. I ended up in the hospital several times and it all became real. I was told in my last hospitalization that I had bronchiectasis (non-CF type), another form of COPD. As if emphysema wasn’t enough, they want to throw ANOTHER diagnosis at me. Blow after blow. 

I don’t want to go to any more doctors. I don’t want emphysema or bronchiectasis or a fucked up knee. I’ve had enough shit in my life already. It wasn’t supposed to turn out this way. I was supposed to get out and get better, not become free and lose my health. I can’t handle any more diagnoses, any more problems, any more hospitalizations.

I’m not really sure what state I’m in. It isn’t shock, because really these are things I should already know. Is it grief? I don’t think so. I’m not sure I have the right to grieve. These things are my fault. If I didn’t smoke, if I went to the doctor more, if I didn’t block out the pain, maybe I wouldn’t be 31 years old with problems I should be having when I’m 70.

How am I supposed to feel? What am I supposed to do?

I need to go

It was just supposed to be a regular doctor’s appointment.

I wanted to see if my doctor would change some of my inhalers, since my recent hospital visits indicate that something isn’t working right.

I was still sick on Monday, but I didn’t think anything of it. I took the train ride down and walked a mile to my doctor’s office. No problem. I made it just fine. I was still standing.

After a few minutes of waiting in the waiting room, the nurse called me back to the room. She took my vitals, and asked if I was okay. Of course I’m okay. I’m just here to change my meds.

The nurse practitioner came in, listened to my lungs, then left the room. Well, then.

A minute later, the nurse came back with an oxygen tank. Then the nurse practitioner came in. You need to go to the hospital.

I sat there, completely shocked. I just came for a followup. This was not in my planning. I had work in a few hours. I needed to get out of here so I could catch the train back home. I don’t have time for the hospital. I don’t have time for this.

But I didn’t have a choice. There was no air exchange in my lower lungs. I wasn’t getting enough oxygen. I ended up being taken by ambulance to the emergency room, in a hospital I had never been to, 40 minutes away from my home.

I couldn’t focus on anything but the time. If I could just get this over with, I can still make it to work. I didn’t understand what the big deal was. I haven’t passed out. These people are just overreacting. I am fine. I can walk. I can talk. I am fine.

But I wasn’t fine. The breathing treatments hadn’t helped. The IV steroids weren’t helping enough. My oxygen was still too low, and they had to admit me. It was then that the panic started to set in. Once they wheeled me to my room upstairs, I started to lose it. The emergency room I could handle, but not this. I started crying.

I could feel myself starting to slip away. I tried to tell the nurse what was going on. I told her I had PTSD, that something bad happened to me in a hospital and that this was extremely difficult for me and that I would rather leave. I kept saying I need to go.

What did my honesty get me? A psych hold. As if I didn’t have enough going on, their response was to put me on a safety 1 on 1. I wasn’t suicidal. I was in a panic state.

I was humiliated. They forced me to take off all of my clothes, including my underwear. I explained to them that I was a survivor of sexual abuse and that I needed my clothing to help me feel protected. They gave exactly zero fucks. I asked if I could speak to someone about this to explain the situation, and they told me no. I asked again to speak to someone higher up, and was told there was no one to speak to. Once they put you on a psych hold, you have no rights. I asked for water for over an hour and couldn’t even get that.

I should have been at work that night. I shouldn’t have been laying in a hospital bed without my clothes and possessions being treated like I had committed a crime. I couldn’t even pee by myself. The aide had to stand there and watch me pee and wipe, just like my mother used to watch me before she decided she needed to “help”.

I cried off and on that night. I wasn’t even concerned about my lungs anymore. I wanted my protection back. I wanted my dignity. It was stolen away from me. Again. My therapist was trying to help calm me down, but I was so out of it I couldn’t process everything she was saying. I eventually got so tired of crying that I fell asleep.

I called my program therapist early the next morning to tell her what was going on and ask for support. I was concerned about the psych hold more than anything. I didn’t want to end up inpatient, and I wanted her to be able to advocate for me if needed. My experience with the nurses had been so horrible, that I had low expectations for the psychiatrist. I expected to have to fight. But I didn’t have to. I saw the psychiatrist later that morning and after two minutes, he had taken off the psych hold. I told him I  had explained to the nurses that I had previous trauma in a hospital and I had PTSD, and he said my reaction was completely understandable given the circumstances.

It was great that the psychiatrist realized that, but I had been put through 17 hours of unnecessary bullshit, re-traumatization, and cruelty. For nothing. I was punished for being a victim.

By then, I didn’t even care how my lungs were at all. I could have been dying, I didn’t care. I was not staying in that hospital any longer. The pulmonary doctor came to see me. She saw something on the x-rays and told me I needed a CT scan. Nope, sorry. I have things to do. My patience was already too far gone. Am I dying right this second? No? Then I need to go.

I told the pulmonary doctor I would come back for the tests. But I don’t need to go back.

I don’t need any more diagnoses. I don’t need any more problems. I don’t need any more humiliation. I can’t take any more.