I waited anxiously in my seat as my fifth-grade teacher officially announced where our annual field trip would be.
With a smile, she said, “We’re going to Jekyll Island!”
I immediately turned to my friends, and we looked at each other with wide eyes, trying to stifle screams of excitement.
“I’ve been waiting for this trip all year!” I exclaimed.
Throughout the rest of the day, I tapped my feet incessantly under my desk as an uncontrollable energy passed through me. Although Jekyll Island is a swamp off the coast of Georgia, I saw the trip as a chance at independence. Every day during recess, my friends and I would plan our activities for the trip. As we were swinging on the playground, I’d loudly proclaim, “I hope we get chicken tenders,” while my other friend would say, “We could stop, get some, and play Uno!”
We planned our carpool extravaganzas meticulously, and we even picked out a music playlist that exclusively included Taylor Swift. To us, the trip was a way of coming into adulthood.
My heart beat erratically as soon as I entered my mom’s car. I rocked back and forth in the back seat as I tried explaining the trip and how momentous it was for me. While my mom stared straight ahead at the road in front of her, I proclaimed, “This field trip only happens once a year! It’s only for all the fifth-graders, and I’ve been waiting my whole life to go!”
Silently, she offered her hand and lamented, “You’re going to disturb your friends with all the noise from the breathing machine.”
Slowly, I sank farther into the leather seat of the car, wondering if I’d ever be able to leave my home for more than just a few hours a day to attend school. My grasp on independence kept waning, but even so, I refused to give up.
Upon coming home from school, I served my dad chai in hopes that it would brighten his spirits enough for him to sign my field trip permission form. But this tactic backfired. When I saw my dad peering at my heavy oxygen tanks and complicated breathing machine, I knew the outcome was doomed. He simply replied, “You know that it’s not possible.”
At the time, I thought my parents were keeping me from going on the trip because I was irresponsible. As I’ve gotten older, however, I’ve realized they stopped me from going on the trip because they understood the reality of my medical condition. In essence, I couldn’t possibly have the foresight to plan for a possible medical emergency.
The next day, I called my friends and told them I couldn’t go on the trip. My good friend Carlie remarked, “We never see you anymore at these things. It’s like you’re never around.”
I lay on my bed and sighed.
“It’s not like I don’t want to go,” I explained. “But I have to bring my oxygen and the machine that measures my pulse.”
Although I desperately yearned for my friends to be supportive, I was met with criticism from a point of lack of understanding.
“I’m sure you’d survive a couple of nights without it. Besides, you can’t just not come. You’d mess with all our sleeping arrangements.”
Wordlessly, I sighed and hung up the phone, feeling dismissed because of my medical condition. I collapsed onto my bed, shifting around to take a nap, but my frustration wouldn’t allow me to rest.
As the year progressed, it became custom for classmates to avoid inviting me to any social gatherings. When summer was coming, I noticed classmates passing around invitations for a pool party during recess. My friends uncomfortably dug their toes in the dirt and shifted the conversation to include me.
“What are your plans for the summer?” a friend asked, narrowing her eyes as she realized I didn’t have an invitation. Ironically, my friends’ repeated attempts to include me in activities only made our relationships feel forced. Eventually, I stopped talking to these friends altogether.
The week after, I decided to sit in the empty classroom during lunch one day. I was tired of having to explain the intricacies of living with myasthenia gravis to my friends. When I went to the hospital later that week, a friend called to ask, “Why weren’t you at the sleepover yesterday?”
I pulled the scratchy hospital sheets over me as I replied, “I’m stuck at the hospital. I don’t feel good.”
I could picture her rolling her eyes at me through the other end of the phone as she groaned, “Why couldn’t you just take medicine?”
Despite her hurtful words, I knew she had good intentions. The internal pain of my lungs struggling to breathe and my legs collapsing from weak muscles is invisible. It is difficult for people to understand something they can’t see. My symptoms of myasthenia gravis are not always visible, but that doesn’t negate the fact that I still have routine difficulties because of them. Now, I am in control of my body as a young adult. I better understand the extent of my physical capabilities, and I no longer feel like my medical condition stops me from being independent. My social life is not governed by limitations, but instead, by possibilities. I surround myself with individuals who acknowledge my disability but still empower me to take thoughtful risks.
Simran Khetpal writes the Friday column on having myasthenia gravis. Contact her at [email protected].