A New Normal

The next morning I awoke to the sun peering in through my window, gently warming the side of my cheek. I opened my eyes, hearing the birds busily chirping outside and was reminded of summer. It was late in July and everything was in full bloom. I wondered how I had missed that. I hadn’t noticed the budding rose of Sharon that was now brimming with soft purple petals. I remembered its light sweet scent. I had somehow missed the budding of my favorite yellow flower bushes whose name I could never recall. I looked down at the fiery yellow flowers from my window, taking in their bright radiance and for a moment I was thankful. Thankful for life. Thankful for new life. I felt a warm breeze blow in past my window and watched as a large bumble bee buzzed by. I wondered what the days ahead would hold.

I turned to my side in bed, slowly hoisting myself up to a sitting position. I could feel my heart bounding and the lymph nodes in my neck were so swollen I could feel them ucomfortably bulge as I moved my neck. One by one, I tossed my frail legs to the edge of the bed. I felt searing pain in my hands and wrists as I attempted to support myself up out of bed. I deeply sighed. I thought I was supposed to feel better?

Making my way out of my room, I grasped the walls of the hallway for support. Hunched over as I had been for months, I slowly made my way to the couch. I collapsed into the large sage cushions, hoping their comfort would envelop me. My heart bounded and I caught my breath. I secretly hoped a change of scenery, even just a few steps away, would somehow bring waves of relief. But my pain followed.

I tried to escape it. In my mind, I desperately ran from my own body.

It followed me down every hallway. It screamed at me each stubborn step I took. It had taken over my bedroom. My own bed had become a place of discomfort and aching pain. Every twist of my body in the night rudely awakened me. I felt my body quiver, as I inwardly attempted to assuage my nerves.

I grabbed the polyester floral pillow neatly positioned on the couch and feverishly pushed it behind my neck. It wasn’t particularly soft but I was happy for its support. Moments later my mom approached with a large protein shake in her hand and a few pills she awkwardly held in the other. I watched her try not to drop them. I quickly swallowed those pills, not wanting to think too long about them. All I knew is that I was supposed to “feel better” and if these were what would do it, I would play along. For now.

That night I sat at the dining room table with my dad, secretly hoping my appetite would return. I had seen the sight of my ribs protruding through my frail abdomen in the mirror earlier that day, and my thighs had diminished to the size of my arms. Weak and startled from the sight of my own wasting body, I knew I had to eat. Even if it meant forcing myself.  So I sat at the dining room table with my shorts now loose around my hips and attempted to force down a few bites of a banana. My stomach filled so quickly. Feeling as if I had consumed a large four course meal, I began to wonder if Dr. Arnold’s promise of “getting an appetite” and “feeling better” somehow did not apply to me. Discouraged, I wondered if my body was somehow different than others who had had success with prednisone. Maybe the steroids wouldn’t help me like they had so many others. Was I somehow different? Did I even have lupus? My mind raced with frustrated thoughts.

Two days passed and I reluctantly continued with the prednisone 60mg. I was sitting in the passenger seat of my mom’s car, and for the first time in as long as I could remember, I could move my knees. Without pain. A spark of hope shot through me. I quickly buried it in disbelief. Not wanting acknowledge any sign of improvement for fear of it being quickly taken away, I ignored any sign of change. Further, I knew that if I did improve, that would mean Dr. Arnold was right. That I did I have lupus. And worse, that I did need medication.

That. Well that I was not ready to swallow.

Over the next week, more change came. I began to stand up tall, no longer walking hunched over as I had these past months. I could move my arms and bend my elbows. Without pain. I lied in my bed in disbelief, slowly moving my ankles and then knees. I flexed my fingers open and closed, waiting for them to start throbbing as they had so ruthlessly. I couldn’t help but doubt my own body, wondering if at some point it would turn on me again. Wondering if I would begin to hurt again like I had. I was happy for the change but something in me knew I wasn’t ‘all better’. Something in me knew things would never return to the way they were. Too much had happened. Too much had been taken away. Things were different now. And I was different now. Something in me told me my fight had just begun.