By Irene Bougatsos
There were several things that stood out to us about this personal essay, from its focused, specific details about the writer’s life to the effective transitions between paragraphs and scenes. However, what we thought was most useful here was the essay’s emotional narrative, moving from shame to self-discovery to loss to an altruistic self-acceptance by the essay’s end.
This strategy is an exemplary way to write personal narratives, especially ones that touch on complex subjects—as “The Odyssey of My Life” does with PASLI disease, loneliness, stigmatization, and grief.
—Zefyr Lisowski, editor
Compared to many of my friends and family, I have had a dull upbringing. My childhood was wonderful but full of sicknesses. I grew up in a loving family full of wonderful and fun people. However, I often became ill and had to be absent from my public school many times throughout my academic career. It was a lonely childhood, one where I stayed in my room recovering from whatever illness I got that week and reading the day away with my pile of books. I was upset with my weak immune system that failed to protect me. I felt I missed out on the best parts of my childhood because I was constantly sick. It took many years to let go of the shame I held about myself.
A tumultuous year of my life was during seventh grade in 2014 where I remained hospitalized for two weeks after my surgery after half a year of having swollen lymph nodes. After getting out of the hospital, I had to be homeschooled for the rest of the school year to protect myself from getting sick from other students as I was still vulnerable. It was hard not seeing the rest of my friends at school and I became even more lonely—it was one of the hardest years of my life. The following year, I traveled down to the National Institute of Health to be evaluated by health professionals. They soon discovered that I had a rare disease called PASLI disease. PASLI disease is a rare, genetic, immunodeficiency disease that gives the person increased susceptibility to bacterial and viral infections. Currently, it is incurable but can be treated with medicine in the form of pills.
When I wasn’t sick, others viewed me as a strong child; however my mental and emotional health was in a constant flux. Some days were better than others, but when stressed my eating habits changed on the fly and I had several days where I consumed less food. It was a tough thing to overcome but I eventually got better as the medicine began to help me and keep me safe. Thankfully, this disease does not prevent me from living my life the way other terrible diseases do. Though I will be stuck with this disease for the rest of my life, I always look at the bright side of life.
My health has increased dramatically over the past few years and I have rarely ever gotten sick. However, one trial was overcome but another was coming. Two years ago in 2019, my grandpa died due to complications of bone cancer. He too spent time in the hospital as I did. While I couldn’t visit him in the hospital, I envisioned a hospital room similar to the one I was in during my two week stay in seventh grade. I saw white hospital walls and various machines hooked up to him. I naturally sympathized with him since I had gone through similar circumstances. When he passed away, it made it a terrible year and hurt our family very deeply. It was hard saying goodbye to him and I still miss him to this day. To make matters worse, he passed away on my birthday which now serves as a grim reminder of who I lost. Even though he is gone, I won’t ever forget him and I will love him forever.
As the years passed, my overall health has become a lot stronger than how it was in 2014. I now hold the strength within to face more tribulations life has to offer. As of now, I am currently volunteering my time to help others who are in terrible situations. Helping people is something I have always wanted to do, as the world becomes a better place when others help one another. Because of this, I recently began training at the Trevor Project, which is a crisis hotline for young LGBT+ people, as a crisis counselor to provide hope to younger people and give them the strength to overcome their personal situations. I am proud to use all the knowledge my hardships have given me to bestow it on others who need it. Self-acceptance has finally happened and I am proud of how far I have come in my life.
Published May 18, 2021
Photo credit: “‘Rainy Streets’, United States, New York, New York City, East Village” by WanderingtheWorld (www.ChrisFord.com) is licensed under CC BY-NC 2.0