Pain that demands to be felt

Embracing Disability

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Content warning: graphic content (blood), narcotics

I’m in worse pain than I was in the emergency room. 

But at least now I’m not internally bleeding. 

I’d been suffering from an annoying pain since I returned from my trip last Saturday, just inside of my lower rib cage. On principle, I waited until Monday to do anything about it. 

At my boyfriend’s insistence, I emailed my primary care physician, who didn’t reply. Unperturbed, I went on with my day and ran 2 miles before my evening meeting. 

Upon returning from my run, I bounced into the bathroom to empty my ostomy bag before a quick shower. 

To my horror, the entire bag was filled with crimson blood. 

Ever since that moment, I can’t stop picturing it, can’t stop talking myself out of what I saw: 

No, it was just because you ate a mixed berry fruit snack earlier. That’s all it is. You’re exaggerating

I beckoned my boyfriend into the bedroom to confirm that I was not having some sort of psychotic breakdown. “Please, I’m reading a horror novel right now,” I’d begged after he vehemently refused to come and look (yes, we’re that couple). Then I called the on-call clinical advice line at my primary care physician’s office.

Of course, the unhelpful on-call clinician told me to go to the emergency room. 

“Really?” I protested. “But I’m not bleeding anymore.” This was true — after a quick shower and bag change, all evidence of blood had disappeared, like I had cleaned up a crime scene.  

“We need to rule out internal bleeding.” 

“Really? But I’m not bleeding,” I repeated ineffectively. 

“Well,” she said, “I’m just going to put it in the notes here that that’s our recommendation.”

Is that some kind of threat?

“And your doctor will call you back tomorrow, sound good?” 

I smiled obediently as if she could see me. “Sure.” 

About five hours later, my boyfriend pronounced, “I would really appreciate it if you would go to the hospital, for me.” He looked at me with those boyfriend eyes, like: I can’t see you in pain anymore. A look I knew all too well. 

Thankfully, our apartment is less than a mile away from the hospital. Ten minutes later, I was triaged through the emergency department, and we waited among a small group of socially-distanced couples. 

We waited nearly two hours before I got a room, at which point the pain had progressed to a noticeably less tolerable stabbing. 

I was given a chest X-ray a few minutes after changing into the gown, which was promising. Shortly after, a nurse came to access my port. She missed on the first try, causing a few milliliters of saline to leak into the cutaneous tissue around my port. It’s not as awful as it sounds, but I felt it. 

She was forgiven for this mishap when she administered 4 milligrams of morphine into my port, which I had asked for in place of fentanyl or Dilaudid, both of which have worse side effects.

“Dilaudid makes me do that stopping-breathing thing, and it really freaks my boyfriend out,” I explained, nodding in the direction of my long-suffering partner. 

The nurse nodded, “Oh yeah, happens to some people.” 

After the morphine, I seemed to float off into a blissful state of calm comfort, which I both expected and welcomed. 

“It’s like I’m still in pain, but it feels so far away that it’s not actually my body,” I explained to my boyfriend, my eyelids thick with narcotics. 

At around 2:30 a.m., I was taken for a CT scan, whereupon being wheeled into the room with the gigantic magnetic tube, I was informed that I would be having a CT scan with contrast inserted through my port.

“It’s going to feel like you’re peeing yourself, but I promise you’re not,” the technician explained, as if I hadn’t been through this before. 

It actually felt like I was burning from the inside out.

When I got back from radiology, alert now that my insides had been engulfed, I noticed that my boyfriend was extremely uncomfortable in his tiny plastic hospital chair. I told him to go home; there was no reason we both needed to be miserable. Reluctantly, my dutiful boyfriend trusted me and my apparent strength enough to handle this on my own and allowed himself to get some sleep. 

It was 3 a.m.

And then … nothing. 

No doctors, no nurses, no lab technicians, no janitorial staff … nothing for four entire hours.

I was all alone.

There was no TV. I had no call button, and when I got up in a fit of frustration to retrieve it, I could hear it beeping in the hallway, seemingly going on forever unnoticed.

I cried — out of frustration, out of panic, out of desperation. I called my boyfriend three times, to no avail. I seriously contemplated disconnecting myself from my IV line and leaving. 

At around 7 a.m., a new doctor came in, awakening me. “You’re discharged,” he announced, handing me a stack of papers with “Radiology Report” written on top. 

As he pandered on, clumsily de-accessing my port, I groggily read over the paperwork.

Under every category: unremarkable.

“Bile ducts and gallbladder: collapsed?” I read aloud. “What does that mean?”

“I’m not your doctor. He left a little bit ago. You’ll have to follow up with your primary care,” and he pointed toward a little note on the bottom of the page instructing me to do so. 

“It could just be a fissure, so probably nothing. It’ll go away on its own,” assured my mother, whom I hadn’t called.

“Thanks,” I said politely, grimacing. If I wanted my internalized ableism fed directly into my ear, I would have called her, instead of her calling me while she’s audibly chopping vegetables for lunch.

Thank you, Mother. I knew it was nothing, and so did the ER doctors, and so did my primary care physician, so thank you for your input. Have a lovely day.

A week later, following a weekend of drinking a bit too much with friends, I feel worse than I did when I went to the emergency room, though this is probably the result of vomiting for two days straight. Playing phone tag with my primary care physician, my ER visit replaying relentlessly in my head. I’m thankful, now more than ever, for my port and home IV fluids.

I’m numbing the pain with caffeine and cannabis so that it is reduced to a dulled knife in my side, rubbing against my internal organs.

It’s mostly congregated on the right side, leaving my left torso with a mere whisper of faraway agony that threatens to migrate.

Good thing I’m left-handed. 

It feels like I’m wearing one of those big wrestling championship belts. Except that it’s covered with thorns and knives, skewering my insides, twinging every slight bend of my waist with pain.

But at least I’m not internally bleeding.

Chloe Moody writes the Monday column on being a college student with a disability. Contact the opinion desk at [email protected] or follow us on Twitter @dailycalopinion.