Josh Lilliston woke up blind.
During his sophomore year at Bel Air High School, Lilliston was undergoing surgery on a cancerous tumor in his right eye. “They took the bandages off and I couldn’t see anything out of my right eye,” he said.
Lilliston, now a senior, is one of only 75 people in the world with myoepithelial carcinoma and the only person in recorded history to have this type of cancer behind his right eye.
Lilliston’s cancer is currently in remission, and he is using the experience to educate others, specifically by appealing to peoples’ consciences: “A lot of people would look at me like ‘There’s something wrong with him.’ It made me feel alienated. I want to enlighten people, to tell them not to stare at people because they are already down enough and they don’t need to feel like an outcast too.”
The road to recovery has not been easy. Lilliston was diagnosed after a month of testing in the beginning of his junior year. “When I found out about the cancer, I was high on morphine for three weeks, and then went into withdrawal.”
The tumor caused major bleeding and drainage into the eye, as well as headaches. The tumor would swell, forcing the right side of Lilliston’s face to swell “to the size of a grapefruit.”
He began treatments on November 4, 2008, at Johns Hopkins, receiving adult doses of radiation daily and four types of chemotherapy weekly.
The treatments, although effective, killed blood platelets and caused excessive nose bleeds. “Anything straining or strenuous made my nose bleed 30, 45 minutes, even up to an hour and a half,” Lilliston said. He lost all of his hair, and his face was burned from the radiation.
The treatments “wiped out every last bit of energy” that Lilliston had, forcing him to “fight through it” whenever he got tired in school, by going to the nurse’s office, leaving classes five to ten minutes early to get through the hallways, and even using an wheelchair at some points to get around.
During his battle, Lilliston still tried to maintain a balanced life. “I would be in the waiting room for four hours doing homework and then go back and get radiation. I’ve always been devoted to schoolwork.”
Although striking a balance was difficult, the hardest part for Lilliston was “being able to get up in the morning. It took the most energy to get up or to even want to get up.”
Lilliston had a strong support system. He cites his mother and brother as critical to his ability to beat the cancer, as well as his best friend, Tim Flahertty.
“One day, I just broke down. I hated life, hated God, hated everything. I didn’t want to be alive. My mother came in, and just told me that God doesn’t hate me, that everything will be alright,” said Lilliston.
Because of his condition, “I couldn’t go out much because I had to wear a mask so I wouldn’t get germs.” Members of Trinity Evangelical Lutheran Church, Lilliston’s home church, “helped me have a social life when I was in the hospital. They came to visit all the time and spent hours with me,” also providing financial assistance and transportation to appointments.
Lilliston’s most crucial source of inspiration and support was his faith. “God played a really big role. I wanted to lose my faith and give up faith completely, but He wouldn’t let me. That’s why I’m here today,” Lilliston said.
He added, “Every night I prayed that I’d get better, that I’d make it through the next day. It didn’t happen right away, but it definitely happened. You can beat anything as long as you have God on your side, you’ll beat anything you go through.”
Now, Lilliston is slowly on the road to medical improvement. He stopped chemo and radiation treatments 10 months ago, and the cancer is still in remission. However, “I still go back. [The doctors] don’t think it will sprout up again, but if it does, they will know.” The tumor is out, but there is something still behind his eye, “probably scar tissue.”
A month ago, Lilliston got a mucus membrane put in to support a prosthetic right eye, “more for cosmetic reasons. In a few years, I will look back to the way I did before this all started.”
He tells his story to “newspapers, people walking down the street, at the Relay for Life, and Impact in Ocean City. Whenever someone calls and asks me to speak, I definitely will.”
Deitz Autobody in Fallston and the Make a Wish foundation combined to fix up a 2004 Kia Optima for Lilliston by tinting the windows, putting skull decals on the hood and side panels, and painting the car black with red sparkles, so “it will look red in the sun and black otherwise,” said Lilliston’s mother, Kathy.
The experience has irrevocably changed his life. “I grew stronger in my faith and closer to everyone I know because I know they could leave or be gone at any time,” Lilliston said. “I stopped taking things for granted and making fun of people. Now that I’ve heard the comments, I know it really hurts.”
Kate Froehlich can be reached for comment at [email protected].