The clinical trial. Me. Next year. It seemed like only yesterday that I got the news. As I walked home from school like every other day, thinking about the fresh-baked cookies that my mom had promised to make for me, I heard the commotion that was going on from inside my home.
Concerned, I ran to the door, shouting “Is everything okay?” This feeling heightened as no one responded.

Suddenly, my father popped out of the kitchen, a wroth scowl on his face. “Be quiet!” he whispered, as he put his finger over his lips. “Your mom is having an important talk with your aunt right now. And if all goes according to plan, this conversation might change your life forever.”

Questions filled my head. What is my father doing here? He’s supposed to be at work. What’s my aunt doing here? She lives in North Van and rarely visits. How can my life change forever? And did my mom end up baking those cookies? I’m hungry. But that third question was what held my attention the most. I was left pondering these questions alone in the kitchen, as my father left to rejoin their conversation. Part of me was filled with curiosity, but an equal part of me was filled with concern over the uncertainty. To keep myself calm, I thought about the rock in my room. It was given to me by my mother when I was five. She had purchased it at the Artisanal Fair 20 years ago. On the rock was a message that read “courage over comfort.” Whenever I am scared or nervous about a situation or obstacle, I think of the rock and it would soothe my worries while also leaving me with a much-needed sense of fortitude.

As time passed, I waited in the kitchen patiently, munching on my mother’s cookies, a smile beaming as I ate. All of a sudden, footsteps started making their way towards the kitchen. “Hello everyone” a voice from the hallway screamed. “Aunty,” my sister yelled, rushing towards her in a big onslaught of excitement. “Why are you here?” my sister asked. “I’m here for Aido, where is he? As footsteps started coming closer towards my direction I felt as if I wanted to curl up in a ball and run away, I guess that’s how it goes when you are told something so staggering – so unbelievably mind-boggling. “Aido, there you are,” my aunt said as she stepped into the kitchen.

“I’ve been meaning to talk to you.”

“Ya, what’s up aunty?” I replied, my heart throbbing as I waited in suspense.

“I was just at work when I came across an article about how UBC scientists are on the verge of curing your eye condition. They have just finished animal trials where they were able to grow back the iris in fish and mice with Aniridia. Now, they are looking for people with Aniridia to participate in the next phase of their research which is human trials. If all goes to plan this could be the first time that a genetic disease in the eye was not only stopped, but reversed.”
As I stared into my aunt’s eyes, I lost focus of everything surrounding me. In that moment I felt numb; my thoughts became deep, it felt like a constant continuation of nothing. My aunt tried to reach me, “Aidan. Aidan. You still there?” There was no luck, no one could break through the barrier I had created with myself. I remember feeling like my life had flashed before my eyes. In life, I have had to be perfect to hide the fact that I’m visually impaired. I have to overcome certain obstacles that no one else could imagine because I’m visually impaired. I have had to go through immense pain and gone to hospitals all over BC because I was born with a visual impairment. And now my aunt is telling me I have the chance to feel normal, it didn’t feel right.

My mother says she can still recall the day I was born. My parents had just gone for their monthly check-up when the doctor found out that my umbilical cord was strangling me and I needed an immediate C section. After the doctors rushed me to the operating room, I was born, but doctors noticed my irises were severely underdeveloped so they referred me to a pediatric ophthalmologist who diagnosed me with a rare eye condition called Aniridia.
Being diagnosed with Aniridia meant that my eyesight will forever be 20 times worse than 20/20 vision and cannot be corrected by wearing glasses. Most people don’t realize how much planning and preparation it takes for me to seem normal. For example, when I was in 6th grade, I had to present an environmental sustainability project. This was the first time I had to present in front of my peers, and like everyone I was nervous. Yet, while all the other kids were nervous about how they looked or who their partners were going to be, I was nervous about my overall ability to present because my nystagmus (a side effect of Aniridia) could hinder my eyesight if I got nervous or tired during my presentation. Luckily, I was able to prevent that from happening as I had a good sleep the night before and brought my rock which always gives me the extra courage I needed to tackle the challenges of being visually impaired.

Two months after the news about the clinical trial, I was in the waiting room at Vancouver General Hospital serenely awaiting my first visit with Dr. ________ the researcher who made this whole experience happen. As I was seated, I recalled the night prior, I remembered how before going to bed I had a mini panic attack because to me, hospitals represented horrible times in my life and the thought of returning every six months severely frightened me. But, as always, I pushed through the fear with help from my rock and by the time bedtime rolled around I was ready for the journey ahead. After Five minutes of quietly waiting, out of the corner of my eye I saw him, a lofty man with spherical glasses and a courtship blazer. “Hello,” he said in a calm, soothing voice. “Please follow me,” leaping out of our seats, my parents and I followed Dr. _______ into a small examination room. In the room was a tall exam table, as well as an examination chair. To the left of these objects was a conventional sink. To the right was a seated area for my parents to wait. Walking into the room Dr. ______ directed me towards the examination chair where he took my blood. Having blood drawn was nothing new, so to me, it was a piece of cake. After that we went through various other examinations such as a visual acuity test, a close-up picture of my eye, and looking at characteristics inside my eye; these were easy as well. Then it was time for the test I dreaded the most, the test that had me pinned down in agony, the test that made my tears feel like blood sopping out of my eye; it was kind of poetic how they chose to schedule it, but I guess that's how they had to do it, especially considering the pain it induced on us children. As I propped myself onto the examination chair awaiting the procedure, Dr. ________ proceeded to put in tetracaine drops into my eyes which numbed my eyes completely and made me blind for a short stint of time. Then he tilted my head back and calmly asked my father to hold my head in an up-right position. “Count to 3,” Dr. ________ told my dad. “1,2 and 3,” as my dad’s voice faded, I felt a sharp object piercing my eye, scraping the surface of my eye as if it was chalk. “Ahhh, I screamed. Stop! Please stop!” It felt as if no one heard me, I screamed again, “Stop!” Suddenly, the pain started to become slightly better, yet I still wasn’t able to open my eyes. “What was that?” I squealed as I jumped out of my chair, “my eyes hurt so much.” As tears started flowing out my eyes, Dr. _______ led us out to the front of the hospital, my parents guiding me as I followed. After a long walk, we arrived at the exit and Dr. ________ told us to come for examinations every six months. When I arrived in my dad’s car shortly after, I told my parents I was never going through that pain again and that I was done with study; however, my parents reminded me of the impact this trial has, not only on me, but thousands of others who suffer with Aniridia. At that moment, I remembered my rock’s message of “courage over comfort” and decided to stay in the trial, even though all I wanted to do was quit.

2 years passed, and whenever I would go back to the hospital for check-ups, I would become a bit braver, a bit more stirring, and a bit brighter as I walked throughout VGH. By then, I accepted the pain of the examinations by focusing on how my participation in this trial could help others in a similar situation to me. My path was certain, I was ready to commit years to this study if it meant my eyes could be cured. However, in the fall of 2018 that all changed, the trial had just been extended for another year, but being a high school student while also managing 7-10 medications per day became exhausting. I remember during my grade 8 year, our class went on a trip to camp and I had to bring about 50 packs of medication which I had to dose myself, and it got to the point where I nearly forgot to keep up with my medications and that could have ruined the trial completely. Due to this, in the fall of 2018, approximately 3 years after the trial started, my parents and I sat down in our kitchen, sensibly coming to realization that it was best for both the trial and I to part ways so I could focus on my academics without having to worry about the extreme pressure to take all my medication on time.

Ultimately, there are moments that have silver linings, and some that don’t. I will never know what I would be like if I stayed in the trial. However, I do know those experiences have somewhat shaped me into the person I am today.

Fear, frustration, sadness, these are the feelings I recall, but also the feelings I overcame. I learned persistence and perseverance. I learned to be courageous in the face of my greatest challenge.

Kind, empathetic, sensitive, and non-judgemental. Audacious and understanding. Nowadays, I know what is important in life because I choose courage over comfort.

- MOTIVAIDAN