“I have a question.”
I didn’t want to hear a question.
“How are you so skinny?”
I grinned the fake smile I had learned when I was ten when people asked me how I was feeling and I knew I had to pretend things were ok. “It helps to have so much pain every time you eat food that you can’t get up for two days,” is what I wanted to say.
“I don’t know.”
She ran her finger around the rim of her wine glass and looked down at the drink in front of her. “I always feel so fat. I wish I could be like you.”
It was another comment I was used to but never figured out how to respond to.
“You don’t want to be like me. I’m a freak.” She looked at me strangely. Oh, I said it out loud that time. I took a too-long drink from my glass. The comment sat in the air and I could feel the gravity of it slowly pressing down on me. I swallowed hard and forced the beer that had collected in the back of my mouth down my throat.
The music vibrated at my feet and I wanted to come up with something clever to cut the tension and lower the pressure in the room. But I couldn’t think of things to say to pretty girls when I was sober and the bar was hot and my brain was sluggish.
She grabbed my hand and I felt my entire body seize up. “Hey.” She whispered it, somehow, in the density of the sound. It was soft. “Mark.” I didn’t want to look at her and I realized I hadn’t actually looked at her this entire time we had been sitting here. My eyes flashed toward her face and back down again.
She had a real concerned look. I moved my hand away and laughed. “Sorry, just, you know, lots of beer.”
In high school the only girl who spoke to me did it out of pity, sharing a few kind words as I sat alone in the art studio or in the back of the cafeteria with my ham sandwich. I didn’t want Taylor to be the same way, but when she saw me take my seat in the corner booth I knew it was the same.
I rubbed my stomach absentmindedly. It hadn’t hurt in years but I couldn’t break the habit of constantly massaging the crippling knot that had been cut out of me.
She slid in the booth next to me and the scent of her perfume almost knocked me over.
I regretted coming out. I didn’t have any friends here. But I was tired of sitting in my room alone. Now I hated being here. Taylor and her girlfriends were having a good time and I was just a creep on the periphery tagging along.
“You drove us here and have had one drink you’re not even done yet.”
I said nothing in response.
I had only actually admitted this secret that defined everything about my life and who I am to three people in my entire life. And every time it felt like I was admitting something shameful, a secret that would somehow make people want nothing to do with me.
Or worse, they would be so moved with pity for my freakishness that they would treat me differently.
I don’t remember what it felt like to be told I had a disease. You would think you would remember one of the most monumental moments of your life, but for me it has just always been a fact, a simple reality. Like my name, or my hair color. I have a disease.
Growing up I used to be terrified of other kids in school finding out. I thought they would hear that I have a disease and run across the cafeteria to get away from me. That they would isolate me when they learned my darkest secret. So I did it for them. I kept to myself and never let them find out.
I felt my eyes watering. Taylor’s perfume was making my head spin.
Taylor grabbed my hand again “Let’s go outside, huh?” I nodded.
It was cold enough that I could see my breath under the street light. Taylor bounced from one leg to another.
“Sorry I’m being weird,” I said, finally. Her arms were crossed tightly across her chest.
“I can leave you alone if you want. I didn’t mean to get you upset.”
I shook my head. “It’s fine,” I said. How do you tell someone that you hate yourself too much to be alone but also feel too much of a burden to others to bother them with your miserable presence?
“If you don’t want to talk we can go back in and dance. It’s our band.” She meant her friends’ favorite group. Their band, not mine. “Or you can actually explain to me why you’re being such a dick?”
She was bending over sideways to try and look me in the eye. I didn’t even know what color they were and I had been friends with her for two years now. Well—friendsish.
I looked at her—really looked at her— for the first time all night. I couldn’t make out the color in the dark, but her expression seemed…genuine. Concerned.
I took a deep breath. It was four words.
They caught in my throat.
I was alone in my dorm room, staring at the cold, white cinder block walls. It had snowed last night. I hadn’t left this bed in eighteen hours, the pain was blinding.
I hadn’t dreamt at all again that night.
I didn’t dream much at night in those days. I think now it was because I spent so much time doing it during the day.
It was the same dream every morning and every afternoon as I lay in bed gripping the sheets to keep from screaming. A woman and a dance floor, and we glide across the floor to a romantic song. Her face is hidden from me.
Taylor’s eyebrows raised, waiting for me to speak. My ears were ringing from the music inside and the smell of her made me weak in the knees. My heart was pounding in my chest and I could feel the anxiety growing by the second.
“I have a…” this would change everything, I thought. “Disease. I was diagnosed when I was a kid and it kept me from being able to really gain weight or whatever so I guess I’m just sensitive about that question.”
Taylor nodded slowly. I looked up at her and caught her eyes. They were shimmering in the light of passing traffic. Her nose was red from the cold. She was waiting for me to say more.
Shit, what more is there to say? I thought. No one ever let me talk this long.
“So when I asked that–“ she started before trailing off. She wanted me to finish the statement.
She was rubbing her arms. To put off having to speak, I took off my jacket and offered it to her. She smiled and took it.
In the snowy afternoon of my bedridden days alone in the cinder block prison of my dorm room I wondered what it would be like to walk in the snow and keep warm together. I was lost in the white horizon and for a moment there was no pain and I was not alone. I felt it there, the sense of hope and promise of my future.
But it was gone as a new wave of pain crashed against my stomach and the seething knot pulled my body inward on itself. A moment and an eternity.
Alone. Again. Or always was. The daydreams and the nightmare of waking life felt as real as the other.
“It’s just old baggage, I guess,” I responded, trying to sound like I did not have tears welling up and my throat was not clenching.
Taylor bit her lip, thinking. She was a few drinks in so words were not coming as fast for her as they usually did. “I didn’t know,” she said and I tried not to laugh so she wouldn’t think I was laughing at her.
“No one does,” I said. “I don’t talk about it. No one wants to know.”
She looked sad. Did I look sad?
I tore at my stomach, curling in the midday sun that tormented me through the window blinds and I felt and saw the infinite dark and kaleidoscope of twirling colors that was the broken and twisted knot inside my abdomen pulling so tight I could not straighten my legs away from my chest and imagined the soothing heat of a warm shower.
My eyes turned to the ceiling, the effort of rolling onto my back and pulling against the knot an exhaustive and painful exercise. I stared at the out of focus water stain I knew was there beside the unlit ceiling light and raised my hand above my face to grasp at the air and the reality of it.
Slowly my toes inched outward from the heavy blanket. Waking up on a winter morning was a slow process of many small bargains. I opened and closed my fist, trying to bring the world into focus, and then let my hand fall limp.
I had managed to free my legs from the warmth and slid out of bed, drenched in a sweat of a broken fever that had already come back.
I placed my glasses on my face from their spot on the table beside my bed and as I reached for a towel I caught a glimpse of myself in the mirror. Was I less today than yesterday I wondered not for the first time.
Soon I was groping down the empty hallway, endless and swirling around me, hoping the silence meant the rest of the students in my hallway were still asleep after a late night that I wondered if anyone had ever even thought to ask me to join and after forever I was in the shower and the warmth of the water and the steam seemed to unfurl the knot within my stomach and when I closed my eyes and breathed it in I could for a moment see it coming undone.
My hand was in the air and my eyes were still blurry and the knot pulled me back into the huddled ball, and the pain was all consuming. I grasped at the heavy blankets to anchor myself into what was and not the dreams that taunted me as I lie awake.
Taylor stood beside me as we leaned against the wall outside the bar and the lights from inside flashed their purples and greens. The cigarette smoke from the couple on the other side of the door filled our lungs and we both coughed.
“I’m your friend you know,” she told me and I could hear the tears in her eyes.
“I guess I’m not used to having one,” I admitted. “I don’t even know how to talk about these things…it’s not something that comes up naturally in conversation.” I spoke without looking at her. If I was speaking to the neon soaked night I could see the words I wanted to say lining up in front of me; it was important they were the right words.
I couldn’t tell what face she made but her voice was not condescending, “It’s ok to feel hurt by it. You don’t need to tell me anything else.” I felt her body move to look at me and my cheeks grew hot.
“I am…better than I was. Almost normal, I think.” I forced myself to look at her as I spoke. She was already looking at me. “You know, less of me now than there was then.” She looked confused. I tried to make a joke and it didn’t work. “I had..um, well, surgery took a lot of intestines out.” Taylor raised her eyebrows. “It turns out, you don’t miss three feet of the stuff.”
“Oh, sure, Mark, very normal,” she laughed. I smiled. I wasn’t sure how to laugh, but it felt good to say these words.
In the white room with the snow blanketing the earth outside my window I rubbed my stomach as a new wave of pain rolled over me and not for the first time or for the hundredth time I thought that I wouldn’t even notice if I were to be stabbed in the gut. It couldn’t be worse than this pain.
I’d probably never know and I would die right here. Maybe I was already stabbed. Over and over my insides were punctured. An army had taken up their swords against me and I could see them slashing at my insides–it was simply their job so I felt no anger towards them for this as I watched them kill me from the inside out, I just wanted to know why I was their victim.
I shut my eyes against the reflection of the sun on the snow outside on the ground. The knot tightened and pulled my legs up against my chest. I wanted to scream but simply mustering the energy to verbalize the pain was beyond me now. How long was I curled up like this? My back hurt. I stretched myself out. I felt my insides peeling apart from one another after being pressed close for too long. The little men marched along and stabbed. I had stretched slowly but I snapped back into my ball as if the strings connecting my limbs to the knot inside had been cut away.
Finally I stood up and walked to the door and I saw that at some point between awakening and the waking dream I was already dressed.
Sometimes it was hard to remember what wasn’t a dream. I looked over at the clock. It was 12:00. Brunch was being served in the cafeteria. I grabbed my hoodie and walked down the frigid hallway. It wasn’t just the air that was cold. The rooms were silent and the white cinderblock walls were towers that magnified my shuffling, weak steps. I pulled my hood up against the rest of the world and cast my eyes down as the knot circled in on itself again, demanding me to fold up again. I fingered the frayed seam of my jacket’s cuff.
I wore this jacket on vacation with my friend Thomas the summer after my senior year of high school.
“Thanks for making me talk,” I said. “We should head back in.” She slid my hoodie off her shoulders and handed it back to me, smiled, and kissed my cheek. “I’ll be there in a second.”
I watched her go back into the bar, and I stood there in the cold, the jacket in my hand, the smell of Taylor filling my nose and I thought of the day we walked across campus in the rain sharing an umbrella. I wondered if she thought about that day, or if it was something that lived only in my memory, a fleeting moment of our crossing lives that left an impression on me alone. Our fingers touched and I felt the shock run through every inch of my body.
The phone rang on a sunny afternoon. I wasn’t used to hearing my phone ring. I couldn’t remember the last time I got a phone call that wasn’t from my parents–and they were sitting on the other side of the room. I answered the phone.
“Dude, I wanna go to the beach…let’s go to the beach. I’m picking you up in two hours. We’ll stay at my house this weekend.” It was one of the first times anyone had ever reached out and I did not know how to respond or react but we went to the beach and all I can remember because of pictures is that I wore this hoodie on that trip when it was new.
I stood at the edge of the ocean, watching the waves futilely break and recede and I thought about life. The foam from the crashing waves fell away at the site of my feet in the sand, but soon drew up the courage to break upon me and bury my feet out of revenge for causing them to fear. From the side of my vision I could see the lifeguard’s boat turned over in the sand behind me as my feet began to sink. The boat was standing lonesome on the hill and the light was reflecting the shimmering waves of the ocean. The sunlight twinkled and rippled just like the sunlight that broke through the window blinds in my childhood home when our plastic pool was set up on the porch. I looked down at the water crashing around my feet and then receding and rippling around my ankles as it streamed back into the ocean.
I remember that flimsy plastic pool we’d set up on hot summer days in the city, and the joy and wonder I had when the rushing water broke around my feet just as the ocean was now while we stood on the edges and emptied it. Sometimes I would stop and let my siblings empty the water and I would run down our steps and stand in front of the stone wall of our porch and watch the waves break over the edge and trickle down toward the sidewalk.
In my cold and barren bedroom, tracing the frayed edges of my old jacket I could not remember what it was like to be that boy, who had the same effortless energy as the little waterfall running down the stone wall.
I put the hoodie back on and I looked out at the midnight traffic and the drunken passerby smoking across the street, and I knew that this was not a dream, and even if Taylor wouldn’t remember our conversation on an unseasonably cold March evening outside the bar with her band playing inside, even if she were not to be the girl on the incandescent light of the dance floor, even if no one would remember me driving them to this place on this particular night, that something important had happened, and I knew that Taylor did not feel differently about me.
And for the first time I thought about what I wanted out of tomorrow.
I had spent so much time in years gone by in dreams and flitting fantasies as the pain crept into my every moment. In those days I did not dream at night because I spent so much time dreaming during the day. But ever since the pain had gone I hadn’t dared to let myself dream new dreams, content to enjoy the moments I was in, savoring the ability to wake up without pain, to eat without pain, to exist without a consciousness of my failed body.
But now in the dark amid the passing flashes of red brake lights I beheld the beauty of the world around me and the couple holding hands a few feet from me waiting for their Uber, and I imagined it was me, and I imagined that I had taken her hand in mine just a few moments ago and we were vibrating with the excitement of endless opportunity together.
I couldn’t know how my life would unfold from here, but I was ready to imagine. To consider that those dreams could be more than dreams. And I was grateful that Taylor asked that question I hated so much, and I was grateful to have her as a friend.
I wiped the tears that had fallen down my cheek with my frayed sleeve and I smelled her perfume and the dream became more than just flashing visions of a faceless someone, and I was in those moments and in the dream I could smell the memory of that rainy walk across campus as we danced, our fingers entwined and the electricity of that touch.
I felt the sky above open and I was falling upward for the first time in my life and I saw the possibility of what my life could be and I wondered how I had never seen it all before. The knot that used to cover my vision as the pain throbbed in my abdomen unfurled into unknown paths leading into the possible.
The neon bar lights hummed and flickered behind me and I walked back into the bar. On the other side of the multicolored spotlights and sea of bodies I saw Taylor waving me down, and knew that it was not pity, and I felt a closeness between us even as we were so far apart. Across the way her eyes held mine, each of us grateful for the other’s gaze.
I walked further into the room, knowing that the dreams and my steps were the same and could be ever so.