Story #4: Erik 

Welcome to the Invisible Stories Project. I’m Liz Allen and this is Story #4: Erik. 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….

One of the reasons Erik and I fell in love was our mutual disdain for sleep. Our first kiss happened on a highly impractical mid-week camping trip where our backpacks were filled with only with a 30 rack of Keystone Light, sleeping bags, and weed brownies. We got up at sunrise to make it back to our classes on time. It was typical for us. We spent the next year dancing until the sun came up and playing beer pong until 7am.

Where did we get that stamina? We were 20 year old NCAA athletes who wanted to make the most of every moment of our youth. As graduation approached, I was trying to pack as much life as possible into every night and weekend, bouncing between the fresh air of the mountains, the chlorine smell of waterpolo practice, and the familiar stink of cheap beer.

At least, that's how I was trying to live, but illness had a way of sneaking up on me. For all my efforts to stay wild and free on the surface, under my skin, my body was at war with itself. A tick bit me while leading backpacking trips and I had gone from working out 4 hours a day to crawling up the stairs to my dorm room. I was in and out of the hospital and specialists - often taking 45 pills a day in a vain attempt to kill the bugs crawling in my blood. I went through periods of remission, when I partied, and periods of pain, when I cried every morning.

Erik and I lived in the space between. Erik seemed to accept and tolerate my illness, not viewing it as a disqualifier for the relationship. I did the same. We rarely acknowledged its existence. We went to parties and I just hoped nothing would happen, never dealing with my illness unless I absolutely had to.

One Saturday, just weeks before graduation, Erik and I went to a party –– one of the last off-campus ragers before we all graduated. This house was packed with boys. Their small living room boasted a keg-er-ator with two taps,and a pungent charcoal corduroy couch with burn holes from marijuana bowls. The carpet was a beaten down hazel color with splotches of spaghetti stains and tiny pieces of paint ball and glitter ground into the shag. On any given night, guests would be out back shooting at the beer cans with BB guns.  It was a wild, utterly college scene.

Erik and I arrived just as the party was getting going. The kegs were flowing. The bar was fully stocked. Couches in the parking lot. They’d added a disco ball to their ceiling and switched the kitchen lights to black lights. Bodies packed the sweaty living room, shots rang out from the parking lot in back, plates of roasted pig were passed around.

I smiled at Erik, and he smiled back. I imagined this was the best life could offer: college graduation a few weeks away, a party with all of my nearest and dearest, a hot and fun boyfriend who loved me.

At the party, we threw back shots of tequila - it burned my throat and I shook my head, kissing Erik with spicy lips. I mean, alcohol wasn’t good for me - my doctor had put me on a strict no beer and no sugar diet… but he hadn’t explicitly outlawed hard liquor. So, on a technicality, I drank. My friends dubbed it “the tequila diet” and we all thought I was getting away with something awesome.  

The beats pounded in my chest, I threw my head back and my hands up, stamping my feet on the sticky floor, the white stripes on my tank top glowing in the black light. Friends piled in when Shakira’s Hips Don’t Lie came on, and I pulled Erik in close, my shirt absorbing the sweat off his bare chest. I never wanted the night to end.

The doors and windows were open, the cool New Hampshire air wafting in as people shuffled out as the night wore on.

By 2am, the living room had only about 10 bodies in it, a small gaggle of people sat on the stairs down to the parking lot, leaning against each other and talking. Erik put on Werewolves of London and we danced in the living room in a circle with a few of our best friends.

The  tequila haze was wearing off, and as softer melodies flowed out of the speakers, I realized I was exhausted. And not normal people exhausted - like immune system failure exhausted. Like unable to walk back to my house exhausted. Like body slammed, knees buckling, fire pulsating through my brain exhausted. I wasn’t sure I could even talk.

I startled even myself - I had to go home. Now. The consequences loomed in my brain - the days of agony, the inability to make it to class, let alone read for class, the tears before, during, and after water polo practice because of the pain.

I pulled on Erik’s shoulder - mouthing “let’s go,” over the crooning of Stevie Wonder’s Superstition. He looked at me confused and quickly shook his head.

I scowled and moisture started to gather in my eyes. I walked  into the kitchen to pick up an old beer cup and pour myself some water, trying to gather my breath and will some energy into my beaten body. I looked over at the living room - my 5 closest friends all had their arms around each other, warning each other about the “writing on the wall” while moving their hips and arms in unison. They were all smiles. I sighed. I certainly didn’t want to pull Erik away. I didn’t want to pull myself away either.

I let a few tears fall, as I turned to the sink. I didn’t have any options left. I had to go home. Every minute I stayed standing decreased my chances of making it the 1 block to my bed. Every minute stolen from sleep would be paid for in pain the next day. I had already traded so much for this perfect wild night. As the alcohol cleared from my brain, I realized the bargain I’d made. And I was scared.

I turned back to the living room, put down my cup, and pulled Erik towards the door.

“I don’t want to go - this is my favorite part of the night. I love the late-night hang. Besides, there are couches right here,” he said, gesturing to the stain filled couches, filled with crumbs. “I’d rather just pass out here.”

“God, Erik, You can just pass out here, But I can’t just pass out here,” I said, frustrated. “I need my bed. I’m tired. I’m sick. I want to go home.” Tears came to my eyes. I looked down, embarrassed to need something like a real bed, embarrassed that I couldn’t hang until the end like we both wanted, embarrassed to be begging, embarrassed I wanted him to come with me, that I couldn’t physically walk to my own house 1 block away.

He got quiet and looked at me straight in the eyes: “Exactly. You are sick. Not me. I don’t need to come with you.”

I was taken aback, surprised by the raw callousness of his answer. I deflated instantly, feeling hollow, skeletal, translucent. But somehow bleeding all the same.

I implored him with my eyes, but my mouth stayed slack. Had he not heard me? Did he not understand? I wished he could be in my skin for just 1 minute. I said I was tired, but the words seems so 1 dimensional, so flat, so completely useless in their ability to describe an exhaustion so complete I could not manage my life for another moment without his help. But I didn’t know any other words to say.

I also believed it was true - why should my illness be a punishment for him? We were both in our senior year. Did he have to give up things he loved because I couldn’t do them anymore? We’d made no commitments about “in sickness and health.”

I decided that I couldn’t force him to care for me the way I wanted or needed in that moment. So I turned, my shoulders shuddering with the weight of his words, and stepped into the street. I cried every step of that one block walk home, breathing in and out, using all of the physical discipline I learned in swimming and waterpolo to keep myself from collapsing. I fell into my bed, on top of the covers, jacket still on, and slept for 12 hours.

[pause]

I’d like to tell you that I woke up the next morning determined to be with someone who would love me for me, even if that meant Lyme-disease me, the me who didn’t want to pass out on filthy couches after too much tequila but to be held safely in a warm bed. I wish I could tell you I woke up with a whole new language that more accurately described my experience. I wish I could tell you I learned to take it easier on myself and body.

But none of those things happened. Language still failed me, I hadn’t yet accepted that this version of me deserved to be loved, and I definitely did not learn to be more gentle on myself. I didn’t want my life to change just because I was sick. So, I kept performing the parts that people were amused by, turning my condition into a joke or a special diet, just trying to keep up with my former self and her friends.

Erik and I dated for another year and a half after graduation, though he never really dated the full me. I mostly dealt with my illness at home, being cared for by my parents, and saved my energetic, fun, sexy self for him. I was unable to bring him into that vulnerable space and knew he wasn’t really interested anyway. It kept things kinda, well, “normal,” delusional for sure, but normal was the safest option, for both of us to keep us an us.

As for me, well, it’s only recently that I’ve stopped trying to live up to the old version of myself, the healthy version of myself, the version from college. It’s only in the last year that I’ve accepted that I may truly remain sick for the rest of my life - and that I had better start planning for it and accepting myself fully.

While it’s hard to be sick in the world of health, my sick self has taught me so much - she taught me, empathy, patience, introversion, and resilience. She taught me how to sit with deep hurt, cutting loss, bottomless grief. And, as I learned to do that for myself, I learned how to do that for those around me, too.  

Today, I have merged those selves - Sick Liz and Healthy Liz. She’s become one person - a person full of contrasts. She is dynamic yet sweet. Wild yet looking for a cozy couch by the fire. Fast moving and long sleeping. Totally flexible yet very regimented. For me, being alive requires holding these contrasting, dissonant pieces of myself together - offering herself to the world as one package: take it or leave it.