Time for a change

Muscle Memories

My friend whimpered, “I can’t believe you’re ditching me!”

A fake look of disgust illuminated her face. I rolled my eyes in response and brushed past her.

As I dragged my feet across all over the moldy floor, I secretly wished that I could stay in my biology class where my teacher would inevitably show slides of plant parts, and time would dissolve as I passed notes to my friend. I was slowly losing hope for a possible alternative. Although I had been receiving intravenous immunoglobulin therapy, or IVIG, since I was 2, the side effects had only recently appeared during the treatment and recovery process.

In one particular incident, my nurse closed off the IVIG as her eyes fluttered to her watch.

“We just started, but looks like I’ll have to pause it.”

The pauses during treatment became inevitable once I turned 13 as my body had seemed to systematically reject the medication that flowed through my veins. Even the premedication designed to prevent side effects during treatment couldn’t stop me from clutching my chest and twisting the sheets as sharp pain would shoot up. With each drop of the medication, a tightness began to swell and constrict my breathing until I reached for my oxygen mask. But there was never any comfortable position to provide me salvation.

Shortly after my last complication with IVIG, I sat in the neurologist’s waiting room, thumbing through fashion magazines as I sat down on the familiar blue and green chairs strangely juxtaposed against the orange wall. In a pediatric waiting room, the bright colors are meant to elicit a cheeriness I no longer could feel as a teenager. Instead, I felt disenchanted by the tacky decor and found myself aimlessly scrolling through Instagram on my phone.

The nurse’s assistant wearing Winnie the Pooh scrubs smiled at me as if this was my first time here and read my name from her clipboard. Gently, she took my blood pressure, height and weight measurements as she jotted down numbers in my patient chart. Unsurprisingly, there were no improvements, but I would always still ask.

I pursed my lips and continued looking through my phone as I attempted to shove the thought of perpetually being 4-foot-5 out of my mind. My dad methodically pulled out his phone to answer my mom’s frantic texts always wondering the same question: Is there something better out there? Did they find something new? With downturned eyes, my dad was always forced to reply with a simple no.

Surely enough, this doctor’s visit was shaping up to be the same as my previous ones. I was disappointed by my lack of progress despite starting new medications and began to fear that my current situation could not be improved. Perhaps, I would have to get accustomed to wearing a CPAP machine for a while longer or to only resigning myself to consuming soft foods. The thought of the incessant struggle made me want to leave this doctor’s visit.

My doctor, who exclusively wore multicolored ties, knocked on the door, interrupting my negative thoughts.

“You may not need IVIG soon.”

I nearly jumped up from my chair and wanted to perform somersaults all the way back home before I neatly regained my composure.

“What do you mean?” I asked.

My legs dangling off the chair could hardly keep still, and I could feel my heartbeat in my ears. He lifted a stack of freshly printed papers revealing that a successful treatment was administered to patients with the same subtype of myasthenia gravis as me. My fingers anxiously brushed through the curls in my hair as my eyes bolted by each word, trying to understand what this could mean for me.

When my doctor had finished explaining the new procedure to my dad, he turned to me and announced, “I’ve scheduled you for your first rituximab treatment on Friday.”

Soon, I learned that instead of receiving monthly treatments, I would be treated as a patient far less often than before. As I contemplated what this could mean for me, my dad and I exchanged smiles, both of us aware of the possibility that my struggle could end.

I knew there was a chance that my good days would finally overshadow my bad days. The mere thought of this possibility had once seemed far and obscure, but I tilted my head up and briefly imagined a new and improved life anyway. When I finally managed to distance myself from the pediatric unit, I realized I could awkwardly fumble around in a dance class or even learn to skateboard with my newfound physical capabilities.

After each doctor’s visit, I would leave feeling disheartened by my static condition. I felt resigned to eternally dealing with all the struggles that myasthenia gravis entails. I forgot what it felt like to be hopeful for a better prognosis, as my doctor, throughout the years, continued to search for a more suitable treatment. I was amazed by his dedication, but most of all, by the fact that he still had hope that there was something better out there.

Now, I wish I had remained positive throughout the years, although it is difficult when a physical condition erodes the emotional capacity to do so. I’m grateful for my family and team of doctors who were all relentless in finding treatment options because they all believed that simply coping with myasthenia gravis wasn’t enough. They all fought for me to have more than just a normal life but rather, an extraordinary one.

Simmy Khetpal writes the Friday column on having myasthenia gravis. Contact her at [email protected].