Dear reader, I want to first acknowledge that there are different situations and conditions that can prevent us from being happy all the time. All of us have felt it. With that said, I firmly believe that in most situations, we have the choice to be happy—and this is a story about choosing happiness and learning to embrace both the “good” and the “bad” emotions. I hope that you can relate to the frustrations we have around our emotions and how we react to them, and I hope that as you read, you are carried away by my story. Trigger warning: mild medical and child suffering.
Seizures are not painful. In fact, when you are in them, everything feels fine. It is like sitting in a theater watching your life go by for 30 seconds. I have experienced many episodes and many genres of seizures. Some of them are confusing: You close your eyes, and wake up in a new place. Others feel like you are really there, bathing in a psychedelic rainbow fever dream. Seizures were a big part of my life, and although they defined me in many ways, I was not discouraged because as a child, the world was truly a beautiful and remarkable place. I watched the trees change colors, and the sidewalks get frosty. I would read books about Egypt, clouds, flowers, and origami. I loved watching TV shows, movies, and musicals, where I would learn every song until I knew them by heart, and I would sing them constantly. I was fascinated by my doctors, who told me all about my condition, and how I would help make new discoveries. Truly, how could a child be sad in a world with so much to offer?
I always looked forward to doctor appointments and hospital visits. I would draw little flowers and smiley faces on the paper they put on the examining table. I would read all the posters in the children’s hospital so I knew which smiley face meant level 1 pain and which one meant level 5. I knew exactly how to help someone having a seizure just like the poster said. Every time I visited a new hospital, I would ask for a cloth doll. I could draw the faces on them, and they all got little hospital gowns just like me. I remember my favorite recovery room had big windows with plants and ivy covering it. Did you know that looking at plants helps patients heal faster in recovery? In that same room, I remember pranking my observation nurse by hiding in a corner where the cameras couldn’t see me. I felt bad after I saw how worried he was. But he was really nice and would show me pictures of his dog; I still have those photos. I remember eating as many popsicles as I wanted, and above all, I remember that I was “a tough cookie”. Those surgeries, doctor appointments, and observation sessions saved my life, and lessened my seizures immensely. I could now live a “normal life”.
Some would say that being in that situation must have been awful, but I knew nothing different. It was a wonderful time. As a child, the only thing that concerned me was how fascinating the world was, and nothing could stop me from being happy about that. That mindset is something I carried with me for a long time because in my eyes, having a childlike wonder was the most important quality one could possess. For many years I followed this ideal to a T, until I was in my junior year of high school.
The brightness of joy began to darken rapidly as I faced disappointment after disappointment. Don’t you hate that feeling? I would often look back on my childhood for moments of happiness, moments that gave me a sense of peace and joy in hard times. However, I began experiencing the psychological phenomena of regression. When a child faces trauma of some kind, the negative memories are stored away until that child reaches a more mature age where they can properly process the situation and emotions. As I looked back at my joy-filled, wonderful childhood, my memories began resurfacing in different and scary ways.
After my first surgery, my body rejected the medicine I was given. My little body was screaming, begging to Get. It. Out. My pain was at level 4 late into the night. I remember my parents, who were by my bedside all night, who had to watch their child suffer, hunched over a container, and covered in wires. Parents whose hearts broke as their crying child asked for help and they could not offer her relief. I remember the marker faces of my dolls crying with me, then smearing and bleeding away. I remember a nurse in residency coming in to implant my next IV, so she could practice on little veins. She tightly wrapped rubber bands around my arm so my veins would pop out. She cleaned my arm and prepared her spot—I always looked away. She had to try again. And again. And again. Finally, I pulled my arm away. I was asked if they could try again.
“No. No more… not today.”
Later, an expert was brought in to place the IV properly. But those failed attempts turned green and sore for days afterward. My sister asked me one day why I don’t put my arms out.
“It’s because a doctor might come out and try again.” Who knew something as small as a needle could be so scary? Whenever medicine was injected through the IV, I could taste it: in my mouth, my throat, my whole body. I would eat popsicles, but they couldn’t cover up the overwhelming bitterness. But above all, I made sure I always, always put on a brave face for my parents, for my sisters, and for my nurses. I knew they all just wanted the sick kid to be happy. I wanted that too. And as the nurse said:
“You are a tough cookie”.
So I was a tough cookie.
But in my junior year, I was lost. I felt little joy. The memories I used as sparks of joy were no longer joyful. Of course, I could never deny I was happy as a kid, because I was. I was happy. Sometimes that joy did shine through, but it was clouded as I slowly became more angry at the world, at myself, at—just everything. I was pulled back into reality when one day, after yet again yelling at my sister, my dad firmly asked me:
“What happened to you? You used to be so much better.” Those words broke me. Of course I wasn’t happy with how I had turned out.
“Why?!” I cried to God in a prayer in my room. “Why can’t I be happy?!” Then, in silent prayer, my words were: I don’t know what’s wrong with me. I want to be happy. It had come so easily to me just a few years ago. So what was different now? It was then I realized why; I was choosing anger.
Epilepsy is very dangerous because it can be caused by any kind of stress. One big cause of stress is big—and especially negative—emotions. When I was younger, I had to suppress and diffuse any negative emotions in order to prevent myself from having big seizures. If I didn’t—bad things would happen. I remember one day in fifth grade, I was so angry at my little sister, I was shaking. I yelled at her. She didn’t listen or validate how I was feeling. I was totally exhausted, and resigned, and as I went to get my seizure medicine, I dropped. For me, it was a silent movie, black and white and moving slowly. But the other side of the screen was far more real. At that moment, my family watched a horror film. My sister was sitting in the kitchen. She watched me stop, and drop my medicine on the floor. Her eyes widened as mine rolled back into my head. Then, I fell hard on the tile floor. For a moment, she didn’t know what to do. She screamed. She screamed for mom and dad. Above her, she heard the frantic footsteps of our parents flying downstairs. They ran to me, seizing on the floor.
“Get out!” they said. She ran out and shut the door behind her. As she ran off to her room, her mind was numb. She was scared. She was crying. Was it her fault? It had happened so suddenly and now she was alone. No one was there to help her. The image of her sister’s eyes rolling back kept playing in her head. The words “Get out!” were just a painful reminder she was going through this fear—in this moment—alone. She could hear frantic arguing between her parents:
“Lift her head! Careful! The tile!”
“What’s the time? Get a timer!”
“I know! I got it! Get the meds! No! Forget that one, the one in the cabinet!”
“30 seconds!”
“Ok! Ok! Do it!”
“The cap won’t come off! How do we do this?!”
“We’re at two minutes!”
That was the longest and worst seizure of my life. I came back to consciousness with my mom and dad kneeling over me, my sister in another room. She had been crying. Now, I wanted to cry. How dare I scare my sister like that. How dare I worry my parents like that. I never again wanted to scare my family more than I had to. So, for about 10 years, I suppressed any large emotions of anger or sadness—instead replaced them with deep breaths, forgiveness, and looking for the positive. Wasn’t it a remarkable choice—to be happy?
As all these emotions and memories hit me, high school me realized that I had never been choosing happiness. On the contrary, I was—in fact—a rare instance where happiness was not a choice, but rather a necessity to keep me alive. The anger I was expressing felt good, in a way, because it was finally a choice for me. I was no longer at high seizure risk. These rising explosions of anger I was having were built up over years of not knowing how to properly communicate my grievances. So, in that quiet, tight moment, I knew that I now had a real, genuine choice: to choose anger, or to choose happiness. I chose happiness.
I began to work on myself. I exercised more patience, but also chose to confront problems that made me sad or angry. I allowed myself to feel my feelings, then pick myself up, and do better. As I write this now, I genuinely believe that I have chosen happiness, but not with the absence of negative emotions. Instead, I embrace them, and love them just as a kid loves watching the seasons change. I implore you: do not deprive your inner child of the joys of life. Choosing happiness as an adult means nurturing your inner child with healthy doses of both joy and grief.
