He was still here,lying next to me with his arm draped across my waist, sleeping like a baby.
“Shawn.” I called his name, doing my best to nudge my body into his, hoping it was enough to wake him up. Shawn, my on-again, off-again ex-boyfriend, knew he was supposed to be gone before the sun came up. That was our unspoken rule, the dance we did whenever either of us just needed to release. We didn’t do morning-after conversations. After a year of messing around, I’d finally gotten to the point where I wasn’t pretending this was anything more than what it was.
“Shawn,” I called again. “You gotta go.” I stared at the ceiling as he stirred beside me.
“A few more minutes,” he mumbled, and I didn’t respond, just used my last bit of strength to nudge his body again. It was time for him to go. My sister would be here soon, and I didn’t feel like hearing her mouth about how I needed to stop giving my undeserving ex my body.
“Huh?” He shifted behind me with a yawn as he sat up and stretched like he’d gotten the best sleep of his life. “You good?” He stumbled out of bed and began getting dressed. I wanted to say, ‘Do I look good?’ but I didn’t have the energy to explain the side effects of my diagnosis to him for the thousandth time.
“Yeah.” I finally sighed.
“Cool. I’ll call you.” He shoved his phone in his pocket, leaned down, and kissed me on the forehead. I tried to turn my face, but he caught my temple.
“Let me know if you need anything,” he said as he walked out of my bedroom door. I exhaled a deep breath and rolled my eyes as I waited to hear my front door click shut.
“Let him know if I need anything,” I repeated out loud. The nerve. I needed him to care about my physical well-being for a long time. I needed him to be my support system when things got rough, but he’d left me. He told me dating a sick girl was too much for him to handle. He knew, like I knew, that there was nothing he could do for me but scratch my itch and bring me food.
His car started up outside my bedroom window, and I exhaled the breath I’d been holding, and the pain, like usual, consumed me. The sharp daggers shot through my body all at once, like someone was sticking me with a million knives. My fingers were curled. My knees locked, my back ached, and my elbows wouldn’t bend. Even my face was riddled with pain. It had taken a lot for me just to ask Shawn to leave.
“Breathe, Noa!” I coached myself like I did every morning. “Just breathe.”
My lupus was clearly in a bitchy mood today. I lay still for a while, staring at the ceiling, taking slow, deep breaths in and out, tracing the shadows on the wall with my eyes, and cursing my old rheumatologist for allowing my condition to go undiagnosed for so long. Had I gotten an earlier diagnosis, things probably wouldn’t have gotten this bad. I took a deep breath and reminded myself to be patient. Trying to rush out of bed would only make things worse. No, I just had to let my body come back to me one limb at a time.
“I am a warrior. I am strong. I am resilient.” I began reciting the affirmations my lupus support app encouraged me to tell myself each morning. “My body can heal.”
With each word, my body became less stiff, allowing me to push myself up slowly, my body shaking. The wheelchair I used was right next to my bed. The days when I could shuffle around on a cane or lean up against furniture were long gone. Nah, my chair had become a permanent fixture in my life. Grabbing the armrest of my wheelchair, I slid in with a victory grunt. Four years of being diagnosed with lupus, two years of being confined to this chair, and I’d come to terms with it, but I still hated that I was no longer in control of my life. Lupus controlled and dictated every aspect of everything I did, and it was tiresome.
“Alexa,” I called through my dry throat. “Play ‘Good Days’ by SZA.”
The music kicked in, and I let it wash over my body and soothe the aching in my joints as I rolled over to the window to start my daily routine. The first thing I had to do was let the sunlight in. I pulled the string, allowing the curtains to swing open. Azalea County, Illinois, was just waking up, loud and chaotic, like always. Everyone seemed to live their lives, blasting their music, watering their lawns, and moving around freely without pain.Must be nice.I rolled away from the windowand headed toward my ensuite bathroom to brush my teeth and wash my face.
I angled my chair slightly left and nudged forward, slowly entering the bathroom. Maneuvering in and out of this bathroom had to be one of the trickiest things about being in a wheelchair. Most of the doorframes in my grandmother’s house that I inherited after my father passed away were too narrow for my chair to fit through. Every day, I was playing a live game of Tetris, trying to get around.
“Just a little more…” I bit my bottom lip and pushed forward. My front wheels cleared the door frame, but my right armrest scraped the door and got stuck, wedging me in the middle of the doorway.
“Ugh,… fuck!” I blew out a frustrated breath as I stared at the sink. My toothbrush was only two feet away, but it might as well have been on Mars because I couldn’t reach it. The more I tried to rock myself free, the more stuck I became. “Dammit!”
“Really, Noa Lee Green?” A familiar voice called out, making me turn my head to look over my shoulder. My sister, Teagan, stood there, her hands on her hips and a judgmental look on her face. The music must have drowned out the sounds of her coming in for her shift. “Why didn’t you just go to the one in the hallway?”
“I can usually get in this one just fine. Plus, I didn’t feel like traveling to the other side of the house.”
“And what were you going to do if I hadn’t popped up over here?” She came up behind me, shaking her head.
“I guess we’ll never know.”
Teagan rolled her eyes, then gently backed my chair out the doorway like she’d done multiple times before when I got myself stuck. Outside of her, there wasn’t really anyone left who could help me out. My dad was an only child. I had no cousins to call, no aunts popping in. It was just my little sister and me.
“Uh huh. And did you fill out that form I sent you? For the Northside Rebuild Program?”
“Here we go.” I rolled my eyes.
“You damn right, here we go. You said last week you were gonna do it. The deadline is today. You want to keep getting stuck in doorways? Or maybe bust your lip open again next time you try to transfer to the toilet? You won’t let me move in here; you won’t come move with me. You need this house renovated to fit your needs.”
“I don’t want anybody tearing up Granny’s house, and I may not even need this chair in the future.”
“There are certified contractors, most of them with records, yeah, but they’re trained. They will not tear up Granny’s house. They’re going to make it better.”
“But I may get better… be able to ditch the chair soon.”
