About a year and a half ago, the life I was living ceased to exist. I was diagnosed with stage 2a Ewing’s Sarcoma, a rare pediatric bone cancer. The harrowing experience that came after that fateful day has transformed not only my body but also my emotional and mental identities.
My existence up until that terrible announcement was carefully planned and under my control as much as it could be. I was finally taking strides to become the person I had always envisioned for myself: I was intently focused on my schoolwork and was on track to become a valedictorian, I had just earned my first job as a sales associate at LUSH, I was watching what I ate, and in addition to going to the gym more often, I was, for the first time in my life, becoming happy with my body image. I played men’s volleyball for my state championship high school team and for the number one club team in Las Vegas. It seemed as if everything in my life was going the way I wanted.
But one of life’s greatest peculiarities is sharp, unexpected turns in the road, and the most profound of those turns came May 2013, when I woke up from general anesthesia with my orthopedic surgeon standing at the foot of my hospital bed. On either side of me, my parents stood, staring emptily like their worlds were just flipped upside down. My mom’s cheeks bore the remnants of tears wiped away and her lips carried the burden of holding back unrelenting sobs. Before I could even contemplate the reason for their somber faces, my surgeon explained that during a bone biopsy, the pathologist had found a tumor with cells consistent with Ewing’s Sarcoma.
Everything around me ground to a halt. His words seemed to hang in the air like a suffocating gas and reverberated in my brain so fiercely that any cognizant thought was unachievable.
Life after that quickly turned into a blur. One of the only ways I could envision making order of all of the confusion and chaos was to let all of my friends and family know what had happened. The best way to do that, I decided, was to upload a photo of my bandages to Instagram, the photo sharing application.
Getting my port put in and starting chemotherapy only six days later, allowed no time for me to process all of the ramifications that came with a cancer diagnosis at seventeen. My left femur had been so badly deformed that I was wheelchair bound all of summer. After eleven weeks of chemotherapy, I had my left hip replaced in order to resect the riddled femur being eroding ferociously by the cancer.
With a surgery as major and invasive as a hip replacement, I was given a list of limitations I would have to live with for the remainder of my life: never again could I run or jump, and every ten to fifteen years, I would have to get the replacement replaced. After that surgery I then completed 27 more weeks of chemotherapy.
Throughout this time, it was important to me to remain connected with the outside world. As an outlet for my creativity and calling on the skills and passion that I discovered in photography class in high school, I turned to Instagram. Before this time, I was an avid Instagram user, but through my diagnosis and entire experience, I learned the real power of Instagram—the power to connect. I have enjoyed many followers and messages of encouragement and support and have had the honor in giving first-hand advice to other teens that are going through similar things.
In addition to having access to a creative outlet and connecting with others, I was also able to retain my sense of agency over how my story was received—to tell my story the way I wanted. Because I lost control in many ways over my own body, it was important for me to have control of what I put out into the world. I wanted control over my own narrative and my story. I was also attracted to the platform because it allowed me to keep a photo journal and track my progress and change throughout this experience. I can, at any time, go back and look at the memories I felt and shared.
Moving forward with my life has a completely new definition now. I have to be much more judicious in my lifestyle choices. Living has been redefined for me, and even though I am still getting used to this new homeostasis, I have learned through this experience that I have the strength to get through whatever life can throw my way.
[Editor’s Note: Michael received the good news from his doctor that he is in recovery with no evidence of disease. He is attending the University of Texas in Austin studying environmental chemistry. When his hair grows back he plans to dye it lavender. ]
Today marks the end of a long journey; for the past 10 months I have been constantly redefining my state of normalcy. This is no different; except now my normal will look a lot like everybody else's. Through this experience, I have learned a lot, including the strength that can come from a loving and supportive community. So for any of you who said kind words either to me, my family, or in private, I thank you. The collective positive attitudes make all the difference. I can't wait to make this just a part of my story and no longer a defining characteristic.
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