Wobbling

Since the last time I wrote, I had hoped that it would all be onward and upward, climbing higher, one step at a time.

But recovery is never linear. The line wobbles, falters, a hiccup here and there.

The last time I wrote, I had recently completed a little pottery workshop. Today, I was due for another workshop. I was so excited. But then I was nauseous. I thought I’d puke if I drove myself, and my husband was not in a state to play chauffeur. Even if he were able to take me, I’m not sure I wouldn’t have vomited over the pottery. But maybe I would have been fine. Maybe I was too careful.

But then there’s that long, deep, dull ache in my left ribcage. The ache that won’t leave. A week ago, I went to the ER and they confirmed that I had yet another pleural effusion, fluid outside my lung, but it was too small to drain. “It will resolve on its own,” they said.
But the pain won’t leave.
It’s not hindering me, not greatly, but it scares me.

A year ago, I was on the ventilator for the second time. I think about it, and I hate it. I had told my family that, if I went on again, I didn’t think I’d come off. But I did. It was hell.

The doctor thought I was doing well enough to wake me up and take me off. Unfortunately, after they’d administered the drugs to wake me, the doctor was called on a rapid. No one could take me off the machine or give me medicine or do anything at all but leave me there, with a giant tube down my throat, feeling like it was on fire. My mom was there, she begged the nurse to help me, “Yes, I could help her, but then everyone on this unit would lose their job,” she said.

I heard that. It burrowed into me. I don’t pretend to know the intricacies of hospital protocol. I don’t know what rapid was called or if a life was saved. I certainly did not want anyone to die on my account, for my comfort. But I also thought that the calling of medical care was “do no harm.” And here I was, flashing hot and cold, trying not to vomit, unable to speak, move my head or upper body. Sitting there, waiting, in pain, and the people who could help refused to do so. It was their fault I was awake too soon. I don’t know how long we waited, but it seemed an eternity. Trauma was digging in. The fear. The helplessness. The mistrust. The harm.

Eventually, the doctor appeared, and they ripped the ventilator out of me. I remember something dark flying out of my mouth, across the room with the vent. I don’t know what. Vomit? Blood? Mess? Something torn from me with the machine? It is a ripping. It is violent. They tell you to cough as hard as you can while they yank. It is not gentle. It is not eased. There are no words or touches of comfort. It is a ripping. Tearing from the inside out and telling you that you are free, you are healed.

My throat was on fire. It ached. It burned. And the feeding tube was still there, rubbing away at the raw flesh. “Please, please, take it out.”

“No, we can’t. We need a way to get nutrients into you if you’ve forgotten how to swallow.”

“I haven’t forgotten. Please, it hurts.”

“Only the doctor can remove it, and he says no.”

“Please, it hurts so bad. Please.”

“I’m sorry, sweetie, we can’t.”

“Please, please, please.” I was in agony. I was alone. I begged. I begged until she had no more pleasantries for me and ignored me. Her “sweetie” didn’t fool me. This was the woman who had said she wouldn’t help me because it would cost her her job. I don’t begrudge her that fear, but the pleasantries were surface-level. You can feel when the nurses truly care. There’s a warmth, a reaching. Here, there was a wall. And now silence, irritation, at the woman on the bed who didn’t understand that she was in pain for her own good. Surely, it wasn’t that bad.

I don’t know if she finally gave me something or if I fell asleep on my own in pure exhaustion.

There was no warmth in that ICU. No connection. I don’t know if it’s the harshness of the environment and the work or if it attracts healthcare workers who are not prone to connections. After all, most folks in an ICU don’t talk back to you. There’s no need to bond, to see the humanity. They’re not coherent. Just keep the bodies alive. I wanted so badly to connect with someone. To be seen.

The feeding tube was miserable, scratching my throat. Then they “fed” me, and the cold liquid dripped down the back. You don’t taste it. Only feel it. It’s awful. And I wonder about my son, in his infancy, when he spent the first six weeks of his life in the NICU, and he was on a feeding tube for most of that time. Did he hate it, too? Did he realize it was unnatural? Was he unhappy, too? We think babies are too small to know or remember, but they feel pain. Did he feel it like I did? Did it make his skin crawl? Did it hurt?

I tried to drink a sip of water, and I coughed a little. I often cough when I drink. It tickled my sore throat. “Ah, see, I can’t give you anything else to drink until we do a swallow study. You may have forgotten how to swallow.”

And so I waited and I waited for a swallow study. I think I waited a day, I’m not sure. But they won’t feed you or let you drink until you complete it. And they wouldn’t take out the damned feeding tube.

Both times, coming off the ventilator was hell, but something about this second time dug deep. It burrowed under my skin and filled me with so much pain. Not just in my body, but in my soul. I didn’t feel human to them, didn’t feel like I mattered. I was a checklist. They barely had time for me. They didn’t care why I was there or how I was doing or how I was feeling. They just wanted to make sure I wasn’t dead yet, I guess.

So, today, I stand on my own two feet. I work on the elliptical for ten minutes. I pace my living room for ten minutes. I’m not out of breath. This is a victory. This is moving forward. This is my body recovering.

But my left rib aches, and I worry. I feel nauseous and take a zofran in quiet desperation. Because I hope the bad things aren’t coming back. I don’t want to go back. I don’t want to hear, “I’m sorry, sweetie, I can’t” in a syrupy voice with no feeling behind it. I don’t want to be another item on a checklist.

And, for the first time in a long time, I sat in my healing corner and sobbed, mouth open in a silent scream, for seemingly no reason. And I sob out to my husband that I’m sorry I’m sick and useless, that I hate being sick. That I don’t want to go back.

I am always so afraid of going back.