Pink Puffer

I spent Thursday night in the hospital.

I was having a hard time breathing since Monday. I ignored it, because I didn’t have time to be sick. So it lingered and lingered.Then it got worse. But I still ignored it. I don’t have time to be sick. I have to go to program. I have to work. I have chapters to read, papers to write, articles to publish, people to help. I am not sick.

By Wednesday, it became an effort just to take each breath. I went to program despite my exhaustion, but I couldn’t hide my cough. I started running to the bathroom so no one would see me struggling to breathe.

I heard the nurse calling me on my way back. She seemed concerned. She said she didn’t even need to listen to my lungs to know that something was wrong; she could hear me breathing feet away. I told her I was fine. I’m not contagious, it’s probably just a mild pneumonia. I talked about it like it was a cold. Nothing major. I promised the nurse I would try to make it to the doctor, even though I didn’t really want to.

I wasn’t planning to end up in the hospital, but after three nebulizer treatments with no improvement, I knew I wasn’t going to make it through the next day. They started breathing treatments as soon as I got to the ER. No change. I ended up on a magnesium drip with IV fluids and Solu-Medrol. Blood tests, nasal swabs, and x-rays all came back clean. It wasn’t an infection. It wasn’t pneumonia. It was COPD.

I spent most of the night crying, eventually falling asleep only to wake up and cry again. I managed to get myself together enough to make it to PHP Friday morning. I made it through most of morning session just fine. Then I took a conscious breath and it all went to shit.

I don’t know if I can quite describe what it feels like. You take in a breath okay, but then it can’t get out. You feel like you’re drowning, but not in water, in air. I hurried out of the room to run to the bathroom again. I saw the nurse out of the corner of my eye, but I was coughing and wheezing so bad I couldn’t talk.

I spent several minutes in the bathroom trying to get back to normal. Shallow breaths. Just take shallow breaths and you’ll be fine. I went back to my group. A few minutes later, my therapist came to the door and pulled me out of group. Great. What did I do now? She took me to the nurse’s office and closed the door.

I sat there, surrounded, trying not to panic. The nurse sat across from me; my therapist sat on the floor. Oh, we’re all sitting. This can’t be good. Someone asked what was going on, if I had gone to the doctor. I told them I went to the hospital; that counts as the doctor. I tried to make it seem not-so-serious. They asked if it was pneumonia.

Before I could answer, I broke down crying. All the emotions came back to me again. The anger. The sadness. The hopelessness. I would have rather had pneumonia.

I didn’t want to cry. My tears did not feel justified. My pain wasn’t valid.

This diagnosis, it’s nothing new to me. I’ve known about the COPD for a while now. So why does it hurt every time I hear a doctor say it? Why am I still grieving? I should be over it by now.

It’s not fair. I went through hell. I got out. This was supposed to be my better life, my life without hurt.

Instead I ended up with this. I didn’t get a break. I got a punishment.

I could sense the concern in the room. I pushed aside my anger and stopped crying. They told me there were options. The nurse handed me a paper with quit assistance programs. My therapist said we could work out a plan. It doesn’t always have to be this way. It doesn’t always have to be a struggle to breathe. You are strong and resilient, she said.

I’m tired of being strong and resilient. It was the truth. What’s the point? Look where strength and resilience has gotten me. Look what I’ve become. A mess.

You need to take time for yourself. What’s that? I go to PHP from 8 to 3:30 every weekday. Then I go straight to work at 4. By the time I get home for the night, I have just enough time to put together a cohesive assignment for grad school. Weekends are full of more work, school work, articles, and errands. I don’t have time for myself.

I just want it to all go away. I want an easy life, even if it’s just for a little while. I don’t want to have to go to a program every day. I don’t want it to hurt when I breathe. I don’t want to be so tired all the time. I don’t want to struggle.

I want to pretend that I am healthy. I want to pretend this diagnosis doesn’t exist. I can breathe. This is normal. There’s nothing wrong with me. This has all been a mistake.

I managed to push it all away for a while. I can smoke a cigarette, nothing is wrong with me. My lungs are fine. My denial was fully engaged, and no one was around to tell me otherwise.

Later on that day, I sat across from my psychiatrist as he waited on hold to try to change my prescription at the pharmacy. I felt the tightness in my chest again. I took a breath and started drowning. I leaned forward and tried to get the air out as best I could.

As I sat back in the chair and tried to compose myself, I heard the psychiatrist say so, you’re a pink puffer. I looked at him, a bit confused. I never in my life heard of a pink puffer before. I asked for clarification. Your breathing, he said. That’s a classic forced expiratory wheeze of emphysema. I don’t even need a stethoscope, I can hear it from here.  Doctors would call you a pink puffer.

I don’t know how much longer I can deny the truth.

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The Things I Did When I Was Hopeless

I never expected this life.

I never expected to be able to step out the front door and walk down the street; before, I was not allowed to leave the house by myself for any reason.

I never expected to be able to check my own mail; before, I never even had a key to the mailbox.

I never expected to be able to lock my bedroom door and sleep at night without fear of being abused; before, I could never rest easily, knowing that my mother could come in at any time.

All of the things my mother told me would happen, they haven’t come true.

She told me that no one would ever like or love me, but I’ve made friends here.

She told me I would never amount to anything, but I’m doing great things.

She told me I could never live without her, but I’ve been living without her now for 13 months.

I wish I would have known that my life would be this different before I did the things I did when I was hopeless.

For a long time, I was a prisoner serving a life sentence with no chance of parole. I tried to reach out for help, and people turned away. I tried to run away from home, but my mother found out every time. I tried, for so long I tried to get free, and instead I ended up trapped even more. So I gave up. I lost all hope. I believed that I was going to spend the rest of my life in that hell.

I was living a shell of an existence, leading a life of pain I didn’t want to prolong any more than I had to. I had no access to a gun, or I would have ended it right then and there. I made several attempts to end my life as early as six years old, but none of them worked. All it got me was damaged kidneys and an even deeper sense of hopelessness.

So I found covert ways to slowly kill myself. I swallowed pills like tictacs, knowing they would damage my kidneys even more. I banged my head against walls and gave myself concussions, hoping one time that I would pass out and never wake up. I drank until I blacked out, hoping I would eventually get to a point where it would be enough to finally crash my system.

And I smoked. I knew that smoking was a guaranteed risk for me. I had already been struggling with asthma and chronic pneumonia since I was 14 years old. I knew that smoking would make me sick. I knew that it would further damage my already damaged lungs. This. This was my ticket to death. This was my escape from hell.

I smoked for years. Even as I felt the pressure building in my chest, the familiar feel of fluid accumulating in my lungs, I continued to smoke. It got to a point where breathing was no longer automatic; it was an effort. It was painful. Not being able to breathe is a scary feeling, one I’m not even sure I can adequately describe to someone who has been lucky enough to never experience it. But every time I became gravely ill, every time I could hear the crackling in my lungs with each breath I took, I secretly hoped it would be the end for me. The pain it caused was nowhere near the pain I felt existing in the prison I was in. I was hopeless.

I did not expect to make it here. I did not expect to escape. I am free now, but all those things I did when I was hopeless have followed me. The scars will fade, the bruises heal.

But my COPD will not go away. And I can’t help but blame myself. I know that it’s not just one thing that caused it. I was medically neglected. I lived in filth and breathed in mold spores every night. I worked five days a week in a dusty warehouse, inhaling so much dust that I would cough up gray mucous every night. But I also smoked. Because I wanted to die. And that’s all I can think about.

When I see an older person on the street, I wonder if I will ever make it to that age. I think about all of the things I will miss out on, the good and the bad. I missed out on my entire childhood. I lost my adolescence. I lost 11 years old my adulthood. And I’ll likely lose most of my elderhood. All because I was so hopeless, I did things I knew would kill me, because I never expected to be free.

When I was first diagnosed, I existed in a world of conscious denial for a while. I told myself that I had nothing to worry about, that I was young, that I didn’t need to take my medications because I felt okay. I acted like I was invincible to the effects of the disease. Then I learned that someone had passed away from COPD – a woman who was only one year older than me. I grieved for her, and I also began grieving my own death. No longer could I tell myself I’m young. I could end up dead. I am not immune.

The irony is that, if this were two years ago, I would have gladly accepted death. I wanted it, because death was the only way I thought I could escape my mother’s abuse. But I don’t want to die. I’ve experienced a life I never expected to live, and I don’t want to lose that any earlier than I have to.

While there is a small part of me that still holds on to hopelessness, that still wants to die, there is a larger part of me that wants to live.

 

The return home, Part 2

My therapist knew exactly where I was in my mind. She knew I had reached the point of hopelessness. She also knew the danger that returning to my home of origin would put me in, a danger that I could not see because my mind was so focused on giving up.

My therapist talked about other options. She realized that half my battle was financial, something I had been not-so-upfront with in the past. That is when she brought up going on disability. I’ve never been on any type of government assistance, because I feared it would mean I was a leech like my parents, constantly depending on others to get by. Also, with SSDI, that would make my diagnoses real, and part of me still lives on in denial.

I promised my therapist I would look into it, even though I really didn’t want to go that route. I told her it wouldn’t matter anyway, because it takes months to process, and that is even if I am approved, which is unlikely the first time around. Then my therapist brought up cutting our sessions down to once a week to save money, and I started to panic. I can barely handle myself right now; I cannot imagine going to therapy just once a week.

Then she brought up seeing another therapist, one that is covered by my insurance. That was even more horrifying than cutting therapy down to once a week. I’ve been in an out of therapy for 15 years, and the last few years were some of the worst because Medicaid makes it near impossible to find competent mental health treatment. I was not about to go through all of that again. I might as well just treat myself.

Then reality hit again. “Ethically, I can’t continue to take your money and treat you, knowing that you may end up homeless.”

I sort of knew this already, but I didn’t want to accept it. The main reason I moved to this particular area was because I needed help, and I knew I could get it from her. I started therapy within a week of moving here, before I even got a job. Therapy was, and has been, my priority. And now I felt like I was losing that, too.

I didn’t want to think about it then. I had to get myself back on track. I needed to remember why I was traveling, that I was going to take an exam that was going to better our lives.

I went home after therapy and started packing my bags. I had a list written out of everything I needed. I obsessively checked and re-checked everything. By the time I was done, I was so exhausted that I just went to bed, but I didn’t sleep much because my mind was still racing with anxiety.

I got up at my usual 4:30 time, took a shower, packed my last-minute things, and went to work. I was hoping for a rather uneventful morning, but that proved to be false hope. Instead, I got another realization that some of the people and things I held hope in were no good. The thought of going back home to my parents reemerged in my mind. I reached hopelessness again.

I tried to fight back, but at that point everything was chaos. I wanted to quit my job and never come back. What was the point anymore? No family, no more therapy, no money, no life. The life I was building here was fading away fast. I didn’t know what I was going to do.

Part of me was afraid to make the trip at all, knowing that I was risking throwing myself into the lion’s den. Part of me had given up entirely. And another part of me knew we needed to take this test, and there was no other way to get there.

With Courage and Superbear right alongside me, I went to the train station after work and caught the train back to my home of origin, still struggling through the mush of possibilities in my mind.

 

The return home, Part 1

Last Friday, I took a train back to the  city I fled 11 months ago.

I didn’t have much of a choice. The graduate schools I am applying to require the GRE for admission – I had never taken it before because it wasn’t required for my first graduate school. The application deadlines are fast approaching (and in one case, very much past) and I needed to take the exam as soon as possible. I tried registering online, only to find out that almost every test location was either closed down, or did not have any available test dates for the next three months. The only option left just happened to be the farthest from my current location, and the closest to my home of origin.

Scrambling, I tried to figure out a way I could even get there. I asked an old friend, out of desperation, if he could take me. He agreed. Because of timing (the test appointment was at 8:00 AM Saturday morning) and distance (an additional 30+ minutes of travel), I had to take the train the day before and stay overnight. It definitely caused some panic.

I was worried about my arrival, because I would be stopping in the center of the city, where all of the buses pass through. Many of my former coworkers travel by bus, and a few of them live in the area. I was worried about someone seeing me and alerting  my mother. But during my therapy session last Monday, my therapist reassured me that the likelihood that someone would recognize me was low. My hair was completely different, and I had lost a significant amount of weight. She encouraged me to work out a plan so I would be out in the open as little as possible. I felt a little better, and less panicked.

And then my week went to shit. Tuesday, I withdrew from graduate school and essentially lost my dream of being a counselor. I was denied for a personal loan, one that I needed in order to get through the summer until I started a new graduate school in the Fall. I had a realization that the people I thought I could depend on were not dependable at all; actually, they ended up hurting me more. I wanted just to go to sleep to avoid the pain, but even that ended up impossible because I was startled awake by nonsense going on close by.

So I spent Tuesday night into Wednesday morning crying. I felt my life crumbling around me. At that point, I decided I should just go home for good. I’m losing everything in the life I was building here, so what else could I do? I decided. Friday, we were going home, and we weren’t coming back.

I walked to work early and sat outside, crying. I felt lost. I was also exhausted, and crying only magnified that exhaustion. I couldn’t deal with the emotional pain combined with the physical pain I am still in, and I ended up leaving work early. Then, cue my emotional break and dissociative chaos I wrote about here.

Somehow I managed to get myself to therapy on Thursday, though I will admit I am not even sure if it was all me. I was a mess. I tried (and failed) to hold it together.

My therapist and I went over what happened in the days leading up to session. I told her how I ended up the closet, which is something that has happened quite a few times before. I reluctantly told her about my plan to return home. I knew it could go one of two ways. My mother would take me in and help me, and I’d have a home and family again. Or she would kill me. That’s what I really wanted. I wanted to go home so my mother would kill me, and I wouldn’t have to worry about doing it myself.

I reached the point of dire hopelessness. There was nothing else left to lose.