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?

Replace

Some nights, when I find myself unable to sleep, I look up old classmates on Facebook. Most of them appear stable. They have successful careers. Many are married with several children. They’re doing things that 30-something year-olds should be doing.

It brings up feelings in me — but not feelings of envy, feelings of grief. I know there are some things I will never be able to have, some things I will never be able to be or to experience.

I didn’t get to have a childhood. I didn’t get to experience the freedom of the teenage years. I spent 29 years of my life in hell. And when I finally got out, I didn’t get to experience the life that I thought I would.

It’s not just the psychological shit. Trauma doesn’t go away just because the environment changes. I knew that would follow me wherever I went. But I wasn’t expecting all of the physical damage to hit me so fast.

I’ve spent the last month hobbling around on crutches. I’ve been in pain for a while. But when you’ve been through what I’ve been through, you learn to shake pain off and deal with it. That’s the safe way, right?

Except it wasn’t. By the time I ended up in the ER last month, my knee was already severely damaged. I had worn all of the cartilage away, to the point where bone was rubbing against bone every time my knee bent, causing pieces of my knee cap to chip away. They recommend a knee replacement. Another surgery.

People don’t understand why I won’t just get the surgery. What’s the big deal? It’s not about the surgery. It’s about everything. Every part of my body is damaged. I have problems that people my age don’t have. People my age aren’t hobbling around on crutches, getting body parts exchanged with metal substitutes. They aren’t sitting in support groups, surrounded by people 40 years older than they are.

Trauma changes people. Not just their minds, but their bodies, too. My emphysema — that isn’t just a fluke. It’s from living in a toxic environment. My heart problem, the dysfunction of my brain and my autonomic nervous system — that isn’t just bad luck. That’s from my brain having to constantly be in overdrive. The poorly healed fractures, the joint problems — that isn’t just the bad genetics of EDS. It’s the result of constant trauma to the body.

Constant reminders of what I went through, courtesy of my body. Constant reminders that I will never be a normal 30-something, just as I had never been a normal child, teenager, or 20-something. Loss after loss after loss.

I deal with the pain. No one really asks about it, so I don’t talk about it. Except for my therapist. He asks me every time we meet. And I brush it off. I tell him I’m used to the pain. Because in my head, I keep telling myself at least I’m not at home, at least I’m not being actively broken. Be grateful for that. In my head, pain is normal. In my head, pain is deserved.

If only they could fix my broken heart like they could fix my spine. Glue the broken pieces back together, then screw in some brackets to hold it in place. Good as new. No darkness any more.

If only they could fix my damaged mind like they could fix my knee. Take out all the broken pieces. Suck out all the bad memories. Take out the whole damn thing. Just replace it with something new, something stronger, something that can’t be damaged.

I’d give anything to erase what’s happened to me, to replace all of the damage that’s been done with parts that cannot be broken. Replace the memories with happy thoughts of what life could have been. Replace the pain with strength. But that’s a hope that can never be fulfilled.

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?

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.