Story #5: Carla

Welcome to the Invisible Stories Project. I’m Liz Allen and this is Story #5: Carla. If you’re the type of person who likes to get the overview of my full story and the background of my illness - check out Story #1, then come back and listen to this. Here we go….

After graduating college in June, I moved to NYC. Erik, my boyfriend of two years, moved up to Northern Vermont where he worked as a carpenter and skied semi-professionally.

Within two swift months after graduation, I relapsed with Lyme disease, which I got during a backpacking trip during the summer after my freshman year. I went from working and partying in the city to living at my parents house, pumping intravenous antibiotic medications into my heart in an attempt to kill the bacteria wreaking havoc in my body. During the first three months of treatment, I barely left my bed, let alone the house.

Six months into treatment, I started to feel quite a bit better. I finally started driving again and the freedom was intoxicating. I desperately missed normalcy of college and friends and my old life. I wanted a weekend to blow off steam. I wanted a weekend to feel 23 again. I wanted a weekend to feel close to Erik.

So, I drove the five hours up to Stowe - medications in a cooler and a large plastic bin of medical supplies tucked into the trunk. I needed to take care of my hickman catheter, or central line - a bit of plastic tubing that delivered antibiotics directly to my heart. The tubing needed to stay dry to prevent infection. If even a single tiny germ got into my line, it could quickly be transferred to my heart with drastic repercussions, including death.

My bin held alcohol prep pads and thin plastic tegaderm covers that stuck to my skin to keep the line protected. It had saline and heparin flushes to prepare the line and to help prevent blood clots before administering the IV Rocephin. It held gauze, safety gloves, a face mask, and other materials to create a sterile field for dressing changes.

The five hour drive zapped my energy and scrambled my brain. But arriving up in Stowe made it worth it. Stowe is a sleepy, ski mountain town with picturesque snow filled fields and every restaurant seemed to have a fireplace. Erik and I huddled under warm comforters in the house he was renovating. At night, we went to dinner with two friends who lived in town. Together, the four of us snuck into a local resort pool. I changed into a black bikini and threw my hair up in a messy bun. Carla and I sat on the edge of the pool, feet kicking slowly in the water as our boyfriends raced each other down the pool.

My bikini showed off my rail thin body and the white plastic tubing wrapping around my body, a contrast to my cream colored skin and freckles. I kicked at the water, annoyed that I couldn’t get in and play. I was a swimmer and played waterpolo in college - it felt supremely unfair to be sidelined as rail meat. I wanted to show off. I wanted to be dunked under the water. , I wanted to chase Erik down the pool and beat him.  I wanted to toss my hair like the Little Mermaid. I wanted.
But dirty pools are no place for central lines. And I had to content myself with chatting with Carla - who graciously stayed on the sidelines with me.

That night an 80s cover-band was playing at a local barn that had been converted into a bar. We were all excited to drink and let loose. I put an IV bag into my pocket along with my saline flushes and went out for the night.

At the bar, I ordered my first alcoholic drink in 6 months since I got the central line - a vodka soda, as I was on a strict no sugar diet. We took our drinks to a corner of the dark bar and the four of us huddled together, talking. I pulled out my meds and I flushed my line with saline and then heparin before plugging in my IV antibiotic bag and letting the course through my body, cooling the tubing and my heart.

I tucked the IV bag into my pocket, underneath my shirt. Announcing I was ready, the four of us hit the dance floor just as Cindy Lauper crooned about girls just wanting to have fun. I raised my hands and danced under the strobe lights.

My arms started to loosen and I could feel the cold IV Rocephin snaking into my veins. I could feel the fire in my stomach from the vodka.  I could feel the beat of the music. I could feel the sweat start to gather in tiny moist drops on my arms.

I swayed my hips and pumped my fist in the air. It was the first time in 6 months that I had been out  - out at a bar, out dancing, out with friends. Happiness skittled about and poured into my blood and shimmied, dancing around like my heart depended on it. I danced like my body depended on it. I danced like my healing depended on it. I danced like I felt no pain or fatigue. Fuck being sick.

Two hours later, I was covered in sweat and the skin around my central line felt raw. I realized that I had lost my tegederm, the plastic covering that protected my central line. I had sweat it off and the line was exposed to the smokey bar, my dirty shirt, and Erik’s sweat as we ground our bodies together.

My heart stopped. My surgeon flashed in front of my eyes - his grave warning about infection filled my ears. My eyes fluttered and grew wide, my neck felt hot, I stared at the exposed line. For just a split second, I hesitated - the fog machine cranking away, the lights turning the line white then red then blue, the beat beckoning me to forget about it. I shook my head slowly, filled with the weight of responsibility - my first night out and I broke the  most important rule. Damnit.

I grabbed Carla and Erik’s hands, pointing towards the naked central line. I had brought pockets of medication, but no tegaderm.

Erik shrugged, “The bar closes in thirty minutes. We’ll be home in less than an hour. Does it really matter?”

I balked and tilted my head. My stomach felt queasy. Was I being dramatic? Could I just finish the night? Was I asking for too much? Was Erik right?

“What should we do, Liz?” Carla interjected.

“Um, go to the hospital and get another one. They’ll have one - it will literally take 2 minutes - I’m sure it’ll be free. I won’t have to check in or anything.” I said, turning from Erik and looking at her pleadingly. I wanted to be a good patient. I needed to be.

She nodded emphatically, “Let’s go! We’ll just blast 80s in the car - it’ll be like we never left. The 24-hr clinic is close. We’ll be back before the bar closes!”

Erik shuffled from foot to foot - he seemed uncomfortable. He wanted to stay, this was his first night out in awhile too and the man loved to dance. But I could sense his obligation to me too. He knew he should be the one to take me.

“It’s okay,” I said but not meaning it, “Carla doesn’t mind.”

She grabbed my hand, giggled, and waved at the boys. “We’ll be back soon!”

We went charging out the bar door into the cool night. Telling myself it was okay that Erik stayed, I threw my hands out and twirled in the cool mountain air with fake enthusiasm.

In the car, we threw in a dance CD and played Shaggy with the windows down to ice the sweat on our limbs. My hair whipped in the wind, and we continued to move our bodies to the beat, belting lyrics to the sleepy town.

Rolling up to the clinic, we were one of the only cars in the lot. We jumped out, grooving to an imaginary beat and waltzed into the empty waiting room, crashing into the intake desk.

I pulled down my shirt to reveal my central line and the man at in-take laughed. “What do you need young lady?” he asked with glinting eyes and a wide smile.

I smiled, “I sweat off my tegaderm, can you clean this and put another one on please?”

He shook his head with a grin and got up from his desk with a quick push. He returned 2min later with 3 tegaderms, 2 pairs of gloves, a pile of alcohol prep pads and dumped them into my hands.

“Now get out of here,” he grinned, giving us a wink. My body relaxed. Easy peasy.

Carla and I went back to the car, tucking our feet under the heaters as we turned the car on but left it in park. Carla immediately put on the gloves, no directions needed. She gently swabbed the central line, the opening, and the red skin around it. She waved the tegederm over the area to get it cool, then carefully peeled it back, and stuck it over the line, encasing my line, my heart, safely back into a sterile environment.

It was the first time anyone other than my parents or home-health care nurse had gotten that close to my central line. It was a sobering moment between two girls who were friends only because their boyfriends were. And yet here was Carla, in this intimate space, the space closest to my heart, cleaning and bandaging it for me.

When she finished, I sighed. My body felt exhausted. The 80s blaring out the car felt forced. I could feel the adrenaline rushing out of my system. I leaned against the seat trying to muster strength to go back to the party.

But before I needed to decide, the boys pulled into the parking lot right next to us. They had caught the last song and then came to get us.

“Things all good?” Erik asked, arm out the window. I nodded, hugging Carla across the seats before hopping into Erik’s car.

“How was the rest of the party?” I smiled.

“Killer.” He responded.
As Erik and I drove back to the house, I realized that for a moment there, with Carla, my body didn’t feel like a burden. She believed me when I said what I needed. She took action in this beautifully selfless way that showed compassion.  She was just a friend’s girlfriend - yet she recognized my sense of loss in that moment and filled it with a fun alternative. She didn’t make me feel like I was asking for too much when I needed to be taken care of.

It was a small act of human kindness, but an important reminder that sometimes your needs get met in the most unlikely of ways by the most unlikely of people. I’ve  been sick for over 15 years now, and I can tell you that being sick opens up intimacy in weird ways - it’s in being weak, that you allow someone else to show their strength. It’s in needing help, that you allow for people to give. Being disabled opens the door to intimacy that otherwise would be shut out. It’s a rare gift - to see this tender and beautiful side of humanity that takes care of those that are fragile. It’s something that still makes me cry when I think about.  And to Carla, wherever you are: thank you for showing me that it’s possible, even at 22, to show up for someone, to cross that barrier of intimacy when you see a person need.